Pulling A Newborn's Strings
The Dignity-Based Legal Theory Behind the European Biomedicine
Convention's Prohibition on Prenatal Genetic Enhancement
By
Nir Harrel
A thesis submitted in conformity
with the requirements
for the degree of Master of Laws
Graduate Department of Law
The University of Toronto
© Copyright by Nir Harrel 2012
ii
Pulling A Newborn's Strings
The Dignity-Based Legal Theory Behind the European Biomedicine
Convention's Prohibition on Prenatal Genetic Enhancement
by
Nir Harrel
Abstract
The emerging technologies of prenatal human genetic enhancement give to third parties the unprecedented power to design newborn genetic traits such as eye and skin color, intelligence, and emotional profile. The literature has not provided any answers to the question as to why these genetic enhancement technologies are prohibited by the
European Biomedicine Convention. This thesis will demonstrate, by way of legal theory, that the prohibition on prenatal genetic enhancement is thoroughly justified on grounds that it violates the human right to dignity, as expressed in Kantian philosophy.
In light of Kant’s Philosophy, genetic interventions for designing identity-related characteristics treat human beings instrumentally, to satisfy the desires of others, as mere means and not as ends in themselves. This thesis offers a deeper understanding of the law and policy regarding the prohibition on human genetic enhancement in order to safeguard future generations in the wake of a brave new world.
iii
Acknowledgments
Professor Trudo Lemmens, for his insightful comments, dedicated support, and caring supervision, which were exceptionally helpful for my academic maturation.
Professor Aharon Barak who have inspired me both in class, court , and through his writing to further research dignity as a core value for humanistic legal theory and practice.
The University of Toronto, Faculty of Law, for the generous financial support and for providing me with a stimulating intellectual hub.
The CIHR training program in Health law, Policy & Ethics, for the training, networking opportunities, and for creating a wonderful forum for presenting original studential research.
To all of my friends and family members, for all their compassionate love and guidance.
iv
Table of Contents
Abstract ……………………………………………………………….……….……………...... i
Acknowledgments ………………………………………….………………………...ii
Part 1 u Thesis Structure and Research Plan
1) Introduction ………………………………………………………………….…..…...1
I) Thesis….……………………………………………………..…...... 3 6 II) Significance ……………………………………………………..…3 III) Thesis Roadmap …………………………………………….…..…4 2) Identification of the Gaps in the Literature………….……………….……..7
3) The Legal Theoretical Framework ………………………………………...10 I) The Theoretical Superstructure …………………………………...10 II) The Vertical Dimension: The Three Levels of Impact of Genetic Enhancement on the Dignity of Human Populations …………………………………….....…10 III) The Horizontal Dimension: The Kantian Philosophy of Dignity …13 4) Methodology……………………………………………………………...….15
I) Research Procedure …………………………………………….....15 II) Scope and Focus ………………………………………………...... 16
Part 2 u Background
1) An Overview of the Candidate Technologies for Genetic Enhancement and their Applications………………………………………………………….…..18
I) The Use of Pre-implementation Genetic Diagnosis for Genetic Enhancement ……………………………………………………..18 II) The Use of Germ-line Modification for Genetic Enhancement …...19 III) Genetic Traits that can be Enhanced ……………………………...20 v
IV) 2) The Therapy/Enhancement Distinction…………………………………..23 I) The Therapy/Enhancement Distinction as a Core Aspect of the Prohibition …………………………………………………………...23 II) The Therapy/Enhancement Distinction in the Bioethical Literature …..25 III) The Subjectivist Approach to Therapy/Enhancement Distinction 26 IV) The Objectivist Approach to the Therapy/Enhancement Distinction..…28 V) Conclusions ………………………………………………………29 3) The Background, Features, and the Key Principles of the Biomedicine Convention...... 31
I) Background to the Council of Europe and the Biomedicine Convention ……………………………………………………….31 II) The Legally Binding Nature of the Biomedicine Convention ……...32 III) The Centrality of Human Rights in the Biomedicine Convention….33 IV) Protected Groups under the Right to Dignity ………………….….35
4) Kant’s Philosophy of Dignity as an Underlying System of Thinking Behind the Biomedicine Convention………………………………………………………...38
I) Introduction ……………………………………………………...38 II) The Misconception of Dignity as an Obscure and Meaningless Value…..39 III) Background to Kant’s Philosophy of Dignity …….……………….39 IV) Human Dignity as Intrinsic and Incommensurable .………………41 V) The Kantian Duty to not Instrumentalise ….……………………...44 VI) Kant’s Notions of Autonomy and Self-Determination ……………46 VII) Dignity as an Inviolable Right under Kantian Deontology ……….49 VIII) A Contending View to Kantianism: Attributed Dignity Theory …...52 IX) Conclusion ………………………………………………………..55
Part 3 u The Legal Theory Regarding the Threats from Prenatal Genetic Interventions to Human Dignity
1) Prevention of Commodification of Human Newborns……………….…….56 I) Introduction …………………………………………………....…57 vi
II) The Counter-Commodification Rationale ………………………...60 III) The Definition and Theory of Commodification …………………60 IV) Evaluation of Designer Babies’ Worth According to Consumer Needs and Demand ………………………………………………63 V) Instrumentalization of the Designed Children …………………….66 VI) Denial of Self-Determination from Designed People……………...68 VII) Conclusion ………………………………………………………...72 2) Objections to the Use of Germline Genetic Engineering for Eugenic Practices…73
I) Introduction ……………………………………………………....73 II) The Counter-Eugenic Rationale of the Legal Prohibition on Germline Modification …………………………………………………….. 74 III) The Aims of the Eugenic Movement ……………………………..76 IV) Eugenics as a Population Level Endeavour …………………….....78 V) Evaluation of Future Members of Society According to Eugenic Views....81 VI) Instrumentalisation of Future Members of Society for Eugenic Purposes ………………………………………………………...... 83 VII) Denial of Self-Determination from Future Members of Society …..85 VIII) Summary ……………………………………………………..…...86 3) Preserving the Genetic Integrity of the Human Species……………………… 88
I) Introduction ……………………………………………………....89 II) Species Integrity Based Rationale ………………………….…….....90 III) The Human Right to Non-Modified Heritage ……………………..91 IV) The Common Heritage Property Doctrine ………………………...93
V) Breaching Species Integrity as a Violation of Human Dignity……...94
VI) Breaching Species Boundaries by Creating a Human-Animal Interspecies ...... 87
VII) Evaluation of the Future Generations According to Views on Species Perfection ………………………………………………………....97 vii
VIII) Instrumentalization of Future Generations for the Cause of Species Perfection …………………………………………....………..…….99
IX) Denial of Self-Determination of Future Generations ……………101
X) Conclusion ………………………………………………………102
Part 4 u Recommendations and Summary
1) Recommendations………...……………………………………………….……...... 104
I) Prenatal Human Genetic Enhancement Justifies a Legal Prohibition ...104 II) Promoting better Understanding the Legal Theory Behind the Prohibition on Human Prenatal Genetic Enhancement in the Legal Community… 108 III) Legal Indications for Estimating the Severity of Violation for the Prohibition on Prenatal Genetic Enhancement ………………….109 IV) Deterring from Prenatal Genetic Enhancement Through Adequate Penal Sanctions……..…………………………..………………...112 V) The Need for Further Harmonisation of Genetic Interventions Law....113 VI) Using the Biomedicine Convention as a Platform for Promoting Further Harmonisation of Genetic Interventions Law…………...115 VII) Development of a Broader International Consensus by an Alternative Legal Theory Based on Equality of Opportunity …………………..116
2) Summary ……………………………………………………………...…..120
3) Tables…………………………………………………………………….126
I) Table A - List of Countries that Ratified the Biomedicine Convnetion...…126
4) Appendices………………………………………………………….……126
I) Appendix A – The Genetically Engineered “Schwarzenegger Mouse”...127
II) Appendix B – A Genetically Modified Human Embryo with Green Florescent Protein(GFP) Genes ………….……...... 128
III) Appendix C – A Genetically Modified Newborn Monkey with Green Florescent Protein(GFP) Genes…………………...….129
5) Bibliography………………………………………………………...……130
1 Chapter One
Introduction
Breakthroughs in the genetic sciences are now opening the previously locked door to the control room of human life. The novel prospects of intervening on the human genome not only entail the curing of complex diseases, but also the non-therapeutic enhancement of a newborn’s capacities. The emerging genetic enhancement technologies will, in the current decade, enable would-be users to select for and against a vast array of genetic traits, including eye and skin colour, athletic ability, intelligence level, and emotional profile. Evidence from experiments on animals offers a glimpse into the sheer potencies of genetic enhancement technologies to alter living organisms. Scientists, for example, have recently enhanced mice by doubling their intelligence and their muscle mass.1 Since 2007, tens of genetically engineered human embryos were created by combining human genome and animal genome.2
An academic and civil movement, known as Transhumanism, avidly encourages the use of genetic technologies on human newborns for the purpose of enhancement. The
Transhumanist movement is intellectually supported and led by geneticists and ethicists from some of the most distinguished universities in the world. Transhumanists claim that parents should turn to biotechnology to improve the genetic characteristics of their children. The Transhumanist movement also sees prenatal enhancement technologies as
1 S. F. Cooke and T. V. P. Bliss “The Genetic Enhancement of Memory” (2003) 60:1, Cellular and Molecular Life Sciences 1 at 3. 2 Nikicia Zaninovic, “Genetic Modification of Pre Implantation Embryos and Embryonic Stem Cells (ESC) by Recombinant Lentiviral Vectors: Efficient and Stable Method for Creating Transgenic Embryos and ESC” (2007) 88:1 Fertility and Sterility at 310; See also Daniel Martin and Simon Caldwell, 150 Human Animal Hybrids Grown in UK Labs: Embryos Have Been Produced Secretively for the Past Three Years, Online :Daily Mail,
Most laws of the world have not caught up with the fast pace of global technology, or the radical legal, ethical, and social challenges associated with such technology. One of the few legal instruments in the world that adresses these technological advances is at the international level, the Council of Europe’s Biomedicine and Human Rights Convention 1997 (hereafter: the
Biomedicine Convention). The Biomedicine Convention serves as the [human rights law framework] for an array of biomedical issues in 30 European nations.4 The Biomedicine convention bans all forms of prenatal genetic enhancement.5 At first glance, the convention’s prohibition on human genetic enhancement may be perceived as peculiar in that enhancement bestows many benefits on human beings. The questions that arise are how and why does the
Biomedicine Convention justify the prohibition on these genetic enhancement technologies that make newborns prettier, stronger, smarter, and more respectful of authority?
The aim of my thesis is to explain the rationales for the legal prohibition of prenatal genetic enhancement, which has was rarely developed in the literature discussion, and to assess whether or not there is a coherent and convincing justification for the prohibition.
The current lack of a sufficient justification attracts an increasing amount of criticism claiming that the answer which the literature provides, namely the bare use of the value
3 J Harris, Enhancing Evolution (New York, Princeton University Press 2010) at 23; See also Stefan Lorenz Sorgner, “Nietzsche, the Overhuman, and Transhumanism” (2009) 20:1 Journal of Evolution and Technology 29 at 30. 4 Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine CETS No,: 164 ,online: Council of Europe,
3 of dignity, is too vague and ambiguous to be convincing.6 Some critics argue that not only does human genetic enhancement not violate human dignity, it actually promotes human dignity.7 At this stage, when the very foundations of a new legal structure are under attack, I feel the need to examine the soundness of these foundations before progressing into higher level issues such as the potential development of the doctrinal and/or enforcement-based aspects of the prohibition.
I) Thesis
This thesis will demonstrate, by way of legal theory, that the prohibition on prenatal human genetic enhancement is thoroughly justified on the grounds of violating the human right to dignity, as articulated in Kantian philosophy. Immanuel Kant’s philosophy of dignity is cohesively comprised of three main elements, all of which are violated by prenatal genetic enhancement: the inherent and incommensurable worth of humanity, the duty not to treat persons as mere instruments; and the obligation to respect personal autonomy and the right to self-determination without external impediment. My theoretical framework will further clarify the legal structure of the
Biomedicine Convention’s prohibition by demonstrating that there are three distinct rationales representing three distinct magnitudes of impact on human populations: the individual level, the societal level, and the species level.
II) Significance
Understanding of the complex rationales of the Biomedicine Convention can significantly assist in policy analysis, regulation, and adjudication. This thesis offers the legal community a deeper understanding of the prohibition on prenatal genetic
6 Maurizio Mori and Demetrio Neri Mori, “Perils and Deficiencies of the European Convention on Human Rights and Biomedicine” (2001) 26:3 Journal of Medicine and Philosophy at 333. 7 Nick Bostrom, "Dignity and Enhancement" at The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office 2008) at 180. 4 enhancement, to correctly interpret, regulate and adjudicate cases in the field. A clearer understanding of the prohibition – its text, its motivations, and its rights – may help to advance interpretation faithful to the meaning of the convention. I will further argue that a better understanding of the reasons for the prohibition is essential for policy assessment in the field. Currently technology is advancing at a faster pace than the relevant policy is, even though said policy is, in due course, expected to catch up. As genetic enhancement develops, its potent technology will significantly affect almost every aspect of social life, from culture to economics. A well thought-through boundary for genetic interventions on newborns requires a good understanding of where particular genetic interventions may infringe upon human rights. The legal theory I develop allows one to theoretically and practically define violations of human dignity and autonomy arising from prenatal genetic enhancement. I also derive from the legal theory working guidelines on how to detect enhancement which infringes upon the prohiibiyion. Furthermore, knowing the reasons for the prohibition is also useful for countries that have not signed the convention, (e.g. Canada), to assess whether or not they wish to adopt a similar prohibition on prenatal genetic enhancement in the future.
III) Thesis Roadmap
Part 1 describes in detail the preliminary aspects of this research, and includes a literature review, the theoretical framework I employ, the methodology used, and a commentary on the significance of the thesis. The first chapter presents an interpretation of the Biomedicine Convention’s prohibition on prenatal genetic enhancement. The second chapter describes the methodology I intend to use in order to establish my own legal theory. The third chapter provides a literature review which demonstrates the originality of the thesis. The fourth chapter establishes the significance of this thesis, including its usefulness for adjudication, policy, harmonisation, and further research. 5
Part 2 gives the foundational background for readers to familiarise themselves with the broader context, particular dilemmas, and conceptual terms that shall be used in this thesis. The background opens with a description of the two candidate technologies – pre-implementation genetic diagnosis and germline genetic engineering – and their capacity to enhance physical, cognitive, and emotional abilities. I then devote a chapter to the distinction between the concepts of ‘therapy’ and ‘enhancement’ according the logic of the Biomedicine Convention. A further chapter offers an overview of the Biomedicine
Convention, its features, its unique characteristics, and its key principles – the foremost of which is the entrenched right to human dignity. I then elaborate on Kant’s comprehensive philosophy of dignity and show how it underlies the Biomedicine
Convention’s conceptual definition of dignity. Part 2 concludes by arguing that dignity will be impacted by prenatal genetic enhancement on three distinct levels: the individual level, the societal level, and the human species level.
Part 3 treats the three distinct levels of potential violation of dignity through the
Kantian concepts of valuation, instrumentalisation, and denial of self-determination. The first chapter of Part 3 details how the emergence of a mass industry for the design and customisation of children turns these children into objectified and instrumentalised commodities. The act of commodifying newborn traits inevitably leads to monetary price tags on different genetic qualities such as height, skin color, and sexual orientation, qualities priced in accordance with market popularity. Such an attempt to evaluate human beings on the basis of their genetic makeup inevitably diminishes their incommensurable and inherent sense of self-worth.
The second chapter of Part 3 discusses various threats to human dignity on the societal level, including neo-eugenic programs that call for children with a select genetic makeup for the service of societal needs, such as decreasing immoral behavior and/or 6 criminal tendencies and increasing labour productivity. Attempts to impose genetic design patterns on vulnerable human beings according to eugenics-inspired societal norms, preferences, and desires treats these human beings as mere instruments for the purpose of creating a faultless, utopian society. The decision to genetically intervene is done without the ability of children to give their consent to the resultant modification or to object to genetic changes that determine their skills, identity-related characteristics, and potential life paths. The power of a preceding generation to influence the life paths of future members of society robs these future members of their right to self- determination, their right to be the sole authors of their own life stories. The third chapter of Part 3 illustrates how genetic germline engineering is not only a threat to the individual or to society, but also to the integrity of the human species as such. The Biomedicine
Convention safeguards the human species from the harms of irreversible modification to the human genome, in its protection of a worldly bond of identity shared by the whole of humanity.
Part 4 recommends a future course of action in considering the challenges of human prenatal genetic enhancement. Part 4 assists in the detection of potential human rights violations according to the Biomedicine Convention by deriving legal indications to evaluate the relative severity of violations of the ban on enhancement. I claim that although the prohibition can be convincingly justified on the grounds of Kantian dignity, such an idealistic, non-pragmatic, and euro-centric approach, might not be able to serve as a basis for a broader, extraneous to continental Europe, international cooperation 7
Chapter Two
Identification of the Gaps in the Literature
Although there is a sizable of body of literature in to the Biomedicine Convention, the relative size of the legal literary corpus devoted to prenatal genetic enhancement is almost negligible in relation to the potential influence this topic will have on human life, human nature, and human evolution. Unlike in ethics where a sizable literary corpus exists, there is a comparatively few legal articles that deal directly with the issue of prenatal genetic modification. There are only a handful of legal articles that deal exclusively with an analysis of the Biomedicine convention. None of these articles are dedicated solely to the topic genetic intervention with the one expectation of the article by Maurizio Mori and Demetrio Neri which highly criticizes the prohibition on genetic enhancement.8
A common theme in many bioethical articles is the fault found with the notion of dignity, which also underlays the Biomedicine Convention prohibition. These bioethical articles criticize the concept dignity as too ambiguous and vague.9 In the legal literature,
Ubaka Ogbogu and Timothy Caulfield argue that the vagueness of dignity severely hinders the ability of this value to guide legal and policy decisions.10Two articles contextualize these criticisms of human dignity to the specific context of the legal prohibition on human prenatal genetic enhancement. 11However, none of these critical
8 Maurizio Mori and Demetrio Neri Mori, “Perils and Deficiencies of the European Convention on Human Rights and Biomedicine” (2001) 26:3 Journal of Medicine and Philosophy 323 at 333. 9 Ruth Macklin, "Dignity is a Useless Concept" (2003) 327:1 BMJ 1419 at 1419. 10 Ubaka Ogbogu & Timothy Caulfield, “Human Dignity and Biotechnology Policy” in Paul Atkinson, Peter Glasnear & Margaret Lock, eds, Handbook of Genetics & Society: Mapping the New Genomic Era (London: Routledge, 2009) at 450.
11Supra n.9 at 328; See also Gilbert Hottois,”A Philosophical and Critical Analysis of the European Convention of Bioethics “ (2000) 25:2, Journal of Medicine and Philosophy 134. 8 articles endeavor to provide a working alternative, let alone a fully comprehensive legal theory that can be ascribed to clarify the meaning of the concept of dignity.
Some of the existing legal literature briefly mentions that the Article 1 of the
Biomedicine convention is based upon Kantian notion of dignity that disallows the instrumentalization of people. 1213 [The scholar] Roberto Andorno asserts that genetic interventions will violate the right to human dignity due to instrumentalization. However,
[the legal literature] he does not explain why and how human genetic modification amounts to dignity-violating instrumentalization. Aside from the brief references to instrumentalization, the additional essential components of Kantian philosophy of dignity are very rarely and sparsely mentioned in the literature. There is also an utter neglect in the literature of other ethical concerns that are covered under the dignity-based rationales of the Biomedicine Convention. These include a diminishment in the inherent dignity of human persons, a deprivation of self-determination of future offspring. These ethical and legal concerns, which are underdeveloped in the literature will be connected together by thesis via Kant’s philosophy of dignity.
The legal literature is rather confused on the question of how many distinct rationales there are in the Biomedicine Convention. The literature is not attentive to the fact that each rationale impacts human dignity on a particular scale of magnitude. Instead, the literature tends to lump these rationales together, as if there were no discernible distinctions between them. Most authors do not distinguish between the individual and social concerns that arise from prenatal genetic enhancement, and make use of the term
12 Ludger Honnefelder, “Bioethics and Human Genetics: Consensus Formation in Europe” (2001) 3:1 Ethics & Politics 1 at 6 ; Ismini Kriari - Catranis , “The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine” (2002) 12 Eubios Journal of Asian and International Bioethics 90 at 91. 13 Roberto Andorno, “Dignity of the Person in the Light of International Biomedical Law” (2005) 55:1 Medicna e Morale 165 at 167. 9
‘eugenics’ to interchangeably describe both. In light of this oversight in the literature, I make a clear analytical distinction between three hierarchical levels of rationale: the individual level, the societal level, and the human species level. This three-level distinction is mentioned in Section 14 of the Biomedicine Convention’s often- overlooked Explanatory Report.14 David Feldman, a prominent commentator on the provisions of the convention, makes mention of a similar distinction.15 The distinction made in the Explanatory Report, however, predates Feldman’s own interpretation of the distinction by a decade. Despite the fact that such a three-level distinction has been suggested, it has very rarely been applied, and virtually entirely ignored, in the legal context of human genetic modification. In contrast to the confused ‘flattening’ of the matter which pervades the existing literature, this thesis contributes to the contemporary discussion by making use of the aforementioned distinction to show that genetic intervention poses different levels of threat to human dignity, with each level of threat operating on a different magnitude of scale.
14 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 14. 15 D Feldman, Civil Liberties and Human Rights in England and Wales, (New York:Oxford University Press ) at 12.6 10
Chapter Three
The Legal Theoretical Framework
I) The Theoretical Superstructure
A good theory is often expressed in architectonic form. A strong foundation is laid, and each subsequent claim builds on the next. The superstructure of my legal theory is matrix- shaped and consists of both a horizontal and a vertical dimension. The vertical dimension locates those populations whose dignity is threatened by genetic intervention, and the horizontal dimension establishes how their dignity might potentially be compromised. Each dimension is comprised of three different elements. The vertical level is comprised of the following: the ground level, which is focused on the individual and is synonymous with the
“prevention of commodification of newborns;” the mezzanine level, which addresses the threats to society and is synonymous with “objection to eugenic practices;” and the highest level, which is dedicated to the whole of humanity and is synonymous with “the preservation of the genetic unity of the human species.” The vertical dimension, which lends the theory both depth and content, also consists of three elements: the inherent and incommensurable worth of humanity; the duty not to treat persons as mere instruments; and the duty to respect the autonomy of persons and their right to self-determine their lives without external impediments.
II) The Vertical Dimension: The Three Levels of Impact of Genetic
Enhancement on the Dignity of Human Populations
One of the essential preliminary questions that must be asked in this study is whose dignity is threatened by threatened by impermissible genetic interventions according to 11 the Biomedicine Convention? I propose a theory which argues that the identities of those at risk from human genetic enhancement include the individual, the society, and the human species itself. These three levels of concern correspond to three different rationales behind the Biomedicine Convention: prevention of the commodification of newborns, objection to eugenic practices, and preservation of the genetic unity of the human species.
The legal theory I formulate demonstrates that each of these rationales not only stands on its own merits, but is also tightly interconnected with its accompanying rationales, to form a vertical three-level superstructure, which, interpreted holistically, constitutes a theory of human dignity. The ground level focuses on the micro scale of the individual and is reflected in the rationale concerning commodification. The mezzo level focuses on groups and is addressed in the rationale concerning eugenics. The highest level is focused on the macro scale of the effects on the human species and is reflected in the rationale concerning species integrity.
The three levels of protection of human dignity are clearly reflected in Section 14 of the Convention, in the explanatory regarding the preamble, which states that:
“[t]his concern (to protect human dignity) has been affirmed at three levels … the first
is that of the individual … the second level relates to society … (and) the third and
final concern relates to the human species. :
-The first is that of the individual, who had to be shielded from any threat resulting
from the improper use of scientific developments. Several articles of the Convention
illustrate the wish to make it clear that pride of place ought to be given to the
individual: protection against unlawful interference with the human body, prohibition
of the use of all or part of the body for financial gain, restriction of the use of genetic
testing, etc. The second level relates to society. Indeed, in this particular field, to a
greater extent than in many others, the individual must also be considered to constitute 12
part of a social corpus sharing a number of ethical principles and governed by legal
standards….
-The third and final concern relates to the human species … There are reasons to hope
that (genetics) could also enable therapeutic progress to take place. However, the risks
associated with this growing area of expertise should not be ignored. It is no longer the
individual or society that may be at risk but the human species itself. The Convention
sets up safeguards, starting with the preamble where reference is made to the benefits
to future generations and to all humanity, while provision is made throughout the text
for the necessary legal guarantees to protect the identity of the human being."16
Unlike the first two lower levels in the theory that are concerned with violations of the relational dignity of newborns in the attempts to genetically enhance them to attain a higher level satisfaction), at the highest level of the legal superstructure, the Biomedicine
Convention’s rationale recognizes the species integrity of the entire human population is at stake, and not merely the dignity of enhanced persons.17
In the case of genetic enhancement, these rationales work together to create a legal safety web which acts to preserve human dignity in the face of various risks, including the instrumentalization of a newborn for the purpose of genetic enhancement. There is an overlap between the three substantive levels of the theory. The first manner of overlapping emerges from the lower levels upwards. For example, the ground level which focuses on the designing of babies according to individual tastes is also very likely to be influenced by eugenic social norms that aim at the improvement of genetic pools of society in general. The mezzo level of eugenics has the potential to modify groups to such a degree that they will eventually diverge from humanity and become a whole new species. And yet, despite the overlap between the three substantive levels of theory, each
16 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 14. 17 Ibid at Section 14(3). 13 of the rationales stands on its own merit. All designer babies are associated with eugenic activity, but not all eugenic activity is associated with designer babies. Eugenics seeks to affect the general gene pool, and hence to improve society as a whole, and not only in part.
Furthermore, eugenics may have negative consequences for species unity when radical genetic modification is inserted into the human genome. Not all eugenic practices will have negative implications on species unity, however, and, for some eugenic practices, the genetic inheritance of future generations will not be altered in any significant manner, even with the passage of several decades.
There is, for each rationale, a different academic discipline that assists in analytically illuminate potential violations of human dignity. With regard to commodification, it is economics, anthropology, and philosophy; with regard to the objection to eugenics practices, it is sociology; and finally, with regard to the preservation of species unity, it is biology. The three rationales are tightly connected to each other. In the case of genetic enhancement, many of these rationales apply altogether to form a legal superstructure. This comprehensive superstructure provides a safety net for preserving human dignity in the face of the risks associated with the instrumentalization of newborns for the purposes of genetic enhancement.
III) The Horizontal Dimension: The Kantian Philosophy of Dignity
The interior of the hierarchical superstructure houses the substantial elements of human dignity. These elements are based upon Kantian philosophy. I moving toward a comprehensive legal theory by applying a Kantian analysis, with its three main ethical duties concerning dignity, to each of the three legal rationales. A central concept which overarches all the rationales is the instrumentalization of the subjects to the wills of 14 thirds parties. On the ground level, instrumentalization is associated with parental satisfaction, on the mezzo level it is associated with the improvement of future members of society and of society as a whole, and on the highest level, instrumentalization is associated with the removal of seemingly inherent flaws in the human species according to a post-human vision of species perfection. In the case of all three levels, genetic interventions are instrumentally performed on vulnerable embryos, which, in turn, grow to become actual persons. Two further ethical concepts relevant to Kantian philosophy are operative here: i) an evaluation of the worth of human beings that reduces their inherent and incommensurable dignity; and ii) a denial of the human right to self- determination without external impediment.
Taken together, an application of the three Kantian elements of dignity to the three legal rationales reveals that there is a systematic thinking behind the Biomedicine Convention in regard to the ethical challenges associated with newborn genetic enhancement.
15
Chapter Four
Methodology
I) Research Procedure
The aim of this thesis is to uncover the rationales behind the prohibition of prenatal human genetic enhancement in the Biomedicine Convention. Such rationales can be thoroughly and comprehensively explained, in legal terms, by way of a Kantian philosophy of dignity. In order to expound the Kantian philosophy of dignity, I will first turn to an explanation it in general, and, in particular, to the relevant concept of this inquiry. We shall see that the Kantian philosophy of dignity consists of three distinct elements: evaluation of the designed persons (which is opposed to the notion of incommensurable and inherent dignity), instrumentalization of the designed persons, and denial of self-determination. In turn, we shall apply the three relevant analytical parts of the Kantian philosophy to three respective levels of the preservation of dignity: prevention of commodification of newborns, objection to eugenic practices, and preservation of the genetic unity of the human species. Each separate rationale will be thoroughly analyzed and philosophically developed to expose the uniqueness, high level of intensity, and new forms in which the prohibited activity of prenatal human genetics violates the Kantian notion of dignity. The symmetry and similarity between the three rationales reveal that they conform to a fully-fledged Kantian philosophy of dignity. Applying the Kantian philosophy to the three rationales will assist in developing a comprehensive understanding of the reasons for the prohibition on human genetic modification.
In addition to a philosophical analysis, I will compare the scope and the extent of the articles of the Biomedicine Convention and its corresponding provisions with another 16 notable international human rights legal instrument, the UNESCO Universal Declaration on
Bioethics and Human Rights (hereafter, the Universal Declaration). The comparison with the
Universal Declaration will provide a thorough overview on how to situate the
Biomedicine Convention’s stance on genetic enhancement in the context of international human rights law. I will occasionally draw a comparison with the stance of another influential international human rights instrument, the European Charter of Human Rights and Freedoms.
II) Scope and Focus
The legal theory behind the Biomedicine Convention is focused primarily on the protection of the right to dignity in the face of genetic interventions. As part of the instrumentalization of newborns to the needs of others, violation of dignity is inseparably tied to infringement of the right to autonomy. Kantian philosophy views restrictions on the self-determinations of free rational agents as themselves violations of dignity.18 I will not directly discuss other concerns arising from the application of genetic enhancement of humans to diversity, equality, solidarity, and strength of political institutions, as they are not directly covered in the dignity-based theoretical framework behind the Biomedicine
Convention. I will, however, treat the concerns surrounding equal opportunity, as a viable alternative legal theory to dignity, for the purpose of achieving a greater international consensus with regard to the harmonization of the prohibition on genetic enhancement.
I will focus the discussion on two interrelated assisted reproductive technologies: pre- implementation genetic diagnosis (PGD) and germ-line engineering (i.e. genetic modification). Issues outside the scope of this research include: the creation of saviour siblings, genetic modification of embryos strictly for research purposes, and pre-natal diagnoses associated with decisions to abort. This thesis excludes any debate concerning
18 C Foster, Human Dignity in Bioethics and Law (Oxford: Hart, 2011) at 43 17 abortion or the destruction of embryos and focuses solely upon the implications of genetic enhancement on young children. The analysis in this thesis in confined only to the genetic enhancement of newborns. I will not engage with somatic genetic modification, which is performed in the post-natal stage of human development.
Although I will explore the therapy/enhancement distinction and outline the concurrent debate, I do not aim at providing a highly detailed definition of this complex distinction.
Firstly, many national regulatory agencies have, on top of the therapy/enhancement distinction in the Biomedicine Convention, stricter and narrower definitions of therapeutic purposes in the regulatory guidelines. Secondly, there is very little consensus in the literature on the precise distinction between therapy and enhancement, and some authors even suggest that precise definitions are impossible due to shifting norms of social construction.19
I will dedicate a large portion of my attention to the emerging use of PGD and human germ-line technologies to design babies. Such technologies and their potential uses are particularly noteworthy as they can serve eugenic purposes that may have a significant impact on human rights. Although these technologies are still emerging, an educated policy debate should have a forward-facing outlook. The Biomedicine Convention has embraced such an outlook in its attempts to anticipate and to prevent threats to human rights before they occur by adopting the precautionary principle.20 In order to assess the prohibition based on the precautionary principle, this research will evaluate the prudent course of action in face of unparalleled and potentially irreversible impact arising from the application new biotechnological to human beings.
19 Laura Colleton, “ The Elusive Line Between Enhancement and Therapy and Its Effects on Health Care in the U.S." (2008) 18:1 Journal of Evolution and Technology 70 at 70. 20 Stephen P Marks,” Tying Prometheus Down: The International Law of Human Genetic Manipulation”, (2002) 3:1 Chicago J international L 115 at 118. 18
Part 2. Background
Chapter One
An Overview of the Candidate Technologies for Genetic
Enhancement and their Applications
I) The Use of Pre-implementation Genetic Diagnosis for Genetic Enhancement
Assisted reproductive technologies have came a long way since the first successful in vitro fertilization in 1978 and are now charting new territories with the advent of advanced genetic technologies. Through genetic testing of embryos, modern medical reproductive technology attempts to avoid the birth of babies with severe genetic malformations. Yet very recent leaps in biotechnology are now opening the door to the design of a baby’s characteristics. The lab procedure of pre-implementation genetic diagnosis (PGD) of embryos enables the selection of the best available baby according to the ‘desirability’ of the characteristics in the genome. In the last couple of years, the traits selected with PGD have moved from severe congenital malformations into the elimination of embryos that could have developed into persons with non-fatal disabilities. Some clinics have even offered parents the technique to alter purely non- medical baby traits including eye color, hair color, and skin complexion.21 However,
PGD can only screen genes that already exist inside the parents’ genome. For instance, the parents might not be able to screen for embryos with genes that are correlated with a
21 T Banchoff, Embryo Politics: Ethics and Policy in Atlantic Democracies, (New York: Cornell University Press, 2011) at 261. 19 high intelligence quotient, if their own genome does not contain these genes.22 The abilities of PGD to design babies can and has already been extended when used in concert with sperm or ova donations in order to achieve a higher level control over the newborn’s genetic characteristics.23
II) The Use of Germ-line Modification for Genetic Enhancement
Genetic enhancement does not end with PGD. The new human germ-line genetic engineering technology is far more potent in remolding human identity and the potential life track of newborns. Unlike PGD that selects the ‘best’ embryo form the parents’ genes, genetic modification enables a person to customize a newborn’s genetic identity to a greater degree by completely erasing ‘undesirable’ traits and replacing them with
‘desirable’ ones. Human genetic modification completely opens the possibility for society to rewrite the genetic identity of a newborn, a possibility far beyond that of mere selection of the best embryo with PGD. Additionally, manipulations made to a genetically modified newborn will also be passed to future generations of offspring.24
Such inheritable genetic modification can include DNA of non-human origin including plants and animals.
The first genetically modified embryo was created in 2007 inside the Cornell laboratories. In order to test the feasibility of human genetic modification, the engineered embryo was injected with the green fluorescent genes of a jellyfish.25 Yet apetition of the
Cornell Researchers has not received permission from the ethics board to allow the
22 Susannah Baruch, “Preimplantation Genetic Diagnosis and Parental Preferences: Beyond Deadly Disease” (2008) 8:2 Houston Journal of Health Law & Policy at 250. 23 Merle Spriggs, “Lesbian Couple Create a Child Who is Deaf Like Them” (2002) 28: 283 J Med Ethics at 283; G O'Sullivan & R.A Ankeny, The Ethics of Inheritable Genetic Modification: a Dividing Line? (New York: Cambridge University Press, 2006) 245 at 299. 24 Ibid. 25 Nikicia Zaninovic, “Genetic Modification of Pre Implantation Embryos and Embryonic Stem Cells (ESC) by Recombinant Lentiviral Vectors: Efficient and Stable Method for Creating Transgenic Embryos and ESC” (2007) 88:11 Fertility and Sterility at 310. 20 embryo to develop. The second genetically modified human embryo followed shortly after, when in 2008, a group of UK scientists created a hybrid human-cow embryo for medical research purposes.26 British regulators from the Human Fertilization and
Embryology Authority (HFEA), have warned that such controversial experiments cause
“large ethical and public interest issues.”27 However, HFEA itself is now giving a green light to enact a law supported by the Ministry of Health, to avoid severe genetic diseases, which will permit the creation of genetically modified babies, with three biological parents.28 The HEFA has approved the "three parents IVF" procedure that in order to combat previously untreated genetic disorders. This revolutionary move on the part of the United Kingdom, which makes it the first jurisdiction in the world to lift its regulatory ban on human inheritable genetic modification, will likely inspire other jurisdictions to embrace genetic alterations that can be transmited to future generations.
III) Genetic Traits that can be Enhanced
The upcoming application of genetic technologies is likely not to be limited to the removal of fatally disease inducing genes, but can very well move in the direction of creating an industry for the cosmetic, physical, and cognitive enhancement of newborns.
The potential to alter and reshape human nature via genetic enhancement is almost boundless. It would be difficult to fathom the potential transformations of humanity in the long term. Genetic modification possesses unparalleled powers in creating or changing traits (e.g. of non-human origin) in a manner that would be inheritable, permanent, and/or life altering. We can learn about the potential applications of human
26 Fergus Walsh, UK's First Hybrid Embryos Created, Online: BBC News
Some geneticists argue that genetic modification can go far beyond the influencing of cognitive traits such as intelligence to the shaping of identity-related traits such as the inclination towards religious or spiritual belief. The renowned geneticist, Dean Hamer, suggests that the gene VMAT2, responsible for vesicular monoamine transporter, affects human ability to experience transcendence and belief in metaphysical worlds. Hamer indicates that various alleles of the gene VMAT2 can lead to various inclinations toward spiritual or religious belief.30 A fellow geneticist, Gregory Stock, points to the possibility of religious parents genetically designing their babies to have an increased tendency for religious belief that would complement the religious education provided by the parents.31
Genetic enhancement can also be used to augment physical properties such as strength to a higher than normal capacity. Consider an example from Harvard University research involving a genetically modified mouse intended for study of how to recreate damaged muscle tissue in humans due to muscular dystrophy. The result of this experiment was an extremely abnormal muscle growth that earned the genetically modified animal the nickname “Schwarzenegger mouse” for its uniquely unusual physical properties (see
29 David Derbyshire, Three-parent babies a step closer after watchdog gives research go-ahead despite 'life meddling' fears Online: Daily Mail Online<: http://www.dailymail.co.uk/health/article-1378486/3-parent-IVF-babies- HFEA-gives-research-ahead-despite-life-meddling-fears.html#ixzz22mrE5x8T>. 30 Nicholas Agar, Designer Babies: Ethical Considerations, online: www.actionbiosceince.org
Yet genetic modification can be used to alter not only the human body but also the human mind. A genetic experiment at Princeton University that was performed on mice provides evidence that changing mental capacities is possible. The research team has genetically modified a mouse by inserting an additional copy of the NR2B gene that is responsible for the glutamate receptor. The receptor is important for cognitive development. The genetically modified mouse exhibited a significantly improved ability in memory and cognitive functioning, which allowed it to solve puzzles that no other ordinary, non-modified mouse was able to solve. This genetically modified mouse permanently retained its genetic advantage and was able to pass its enhanced cognitive genetic makeup to its offspring.33
As we can see from the examples above, recent advancement in genetic enhancement technology could very well reshape human characteristics and identity- related traits. The alteration of intelligence and strength, for example, can be used both for therapy and enhancement, depending on the intention at hand. For instance, intervention upon intelligence genes can be used both for curing retardation and/or designing geniuses. Intervention in muscle-development-related genes can be used either for treating muscular dystrophy or creating genetically modified persons with physically abnormal strength. How can the law distinguish between possible use of the same genes for very different purposes?
32 Danielle Simmons, “Genetic Inequality: Human Genetic Engineering” (2008) 1:1 Nature Education 1 at 2.
33 Ml J Sandel, The Case against Perfection: Ethics in the Age of Genetic Engineering, 2nd ed, (Cambridge: Belknap Press of Harvard University Press ,2009) at 13. 23
Chapter Two The Therapy/Enhancement Distinction
I) The Therapy/Enhancement Distinction as a Core Aspect of the Prohibition
The Biomedicine Convention recognizes that the human right to dignity entails the right to health, which genetic interventions for therapeutic purposes help to promote.34
Such therapeutic interventions are perceived by the Biomedicine Convention as lesser threats to human dignity than are those interventions directed toward ‘social enhancement.’35 For the purpose of prohibiting enhancement, the Biomedicine
Convention has embraced the common bioethical distinction between therapy and enhancement. Article 12 of the Convention asserts that “[t]ests which are predictive of genetic diseases or which serve either to identify the subject as a carrier of a gene responsible for a disease or to detect a genetic predisposition or susceptibility to a disease may be performed only for health purposes or for scientific research linked to health purposes, and subject to appropriate genetic counseling.” Similarly, Article 13 states that
“[a]n intervention seeking to modify the human genome may only be undertaken for preventive, diagnostic, or therapeutic purposes and only if its aim is not to introduce any modification in the genome of any descendants.” Section 89 of the Explanatory Report, which elucidates Article 13, explicitly mentions human enhancement as a forbidden practice due to fears that modifications of the human genome might lead to creating
34 Maurizio Mori & Demetrio N Mori, “Perils and Deficiencies of the European Convention on Human Rights and Biomedicine” (2001) 26:3 Journal of Medicine and Philosophy 323 at 329. 35 Deryek Beylevald & Roger Brownsword, "Human Dignity, Human Rights, and Human Genetics" (1998) 61:15 The Modern Law Review 661 at 676.
24 persons or groups that are endowed with particular characteristics according to the requirements of those who decide upon their genetic composition.”36
Norberto Nuno Gomes de Andrade argues that the therapy/enhancement distinction that the Biomedicine Convention makes is ill-defined, and is thus prone to the commonly known difficulties relating to this distinction.37 Although Andrade is largely correct in his observation about the weaknesses of the therapy/enhancement distinction, he should bear in mind one of the main principles of the Biomedicine Convention, that it merely establishes a framework for member countries to add a more detailed set of regulations in the future.38 Several countries that ratified the convention do have their own regulations, regulations that set more restrictive criteria for defining therapeutic aims such as ‘severity’ and ‘lethality.’ Additionally, regulatory agencies promulgate a closed list of authorized conditions that warrant genetic intervention. Countries that have ratified the Biomedicine Convention but do not have such detailed regulatory definitions in place, however, may be forced to use the basic therapy/enhancement distinction.
The aims of this chapter are modest. Though the chapter will outline some of the main aspects of the therapy/enhancement distinction, it will not provide a fully exhaustive discussion of the many intricacies, complexities, and points of disagreement regarding the therapy/enhancement distinction. The sheer complexity of the topic and the fact that this thesis is not focused solely on this it does not allow me to offer any novel ways to resolve the almost inevitable hurdles that come with the therapy/enhancement distinction. What will be provided in this brief review are recommendations in the legal
36 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 89. 37 Norberto N G de Andrade, “Human Genetic Manipulation and the Right to Identity: The Contractions of Human Rights Law in Regulating the Human Genome” (2010) 7:3 Scripted 429 at 437. 38 Roberto Andorno, "The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law" (2005) 2 Journal of International Biotechnology Law 133 at 134.
25 context on how judges might make a clearer distinction between ‘therapy’ and
‘enhancement’ in the context of genetic intervention.
II) The Therapy/Enhancement Distinction in the Bioethical Literature
The bioethical literature on genetic intervention commonly describes the therapy/enhancement distinction as a line between the permissible therapeutic practices of medicine and the potentially illegitimate enhancement-based interventions that, for biological reasons, are outside the professional domain of medical practitioners.39
Numerous articles criticize the therapy/enhancement distinction by attempting to discredit its validity. Despite the criticism in the literature, however, the therapy/enhancement distinction is still a fundamental part of the human genetic intervention discourse.40
There is a fair amount of consensus among experts in the field of genetics that the therapy/enhancement distinction is not altogether useful or unuseful. The distinction is useful in cases that can be clearly classified as ‘therapy,’ such those involving the mitigation of HIV, and, alternatively, in cases that can be clearly classified as
‘enhancement,’ such as those involving performance-improving drugs for athletes. Still, the therapy/enhancement distinction may face difficulties when attempts are made to classify more difficult cases where the distinction between therapy and enhancement is rather grey. Grey-area cases involve such matters as the provision of growth hormone to children of shorter stature, and the provision of Ritalin for persons with attention deficit
39 Patricia Baird, "Altering Human Genes: Social, Ethical and Legal Implications," (1994) 37 Perspectives in Biology and Medicine 566 at 568. 40 Eric T Jungest, "Can Enhancement Be Distinguished From Prevention in Genetic Medicine?" (1997) 22 The Journal of Medicine and Philosophy 125 at 126. 26 disorder.41 Some of these (grey-area) classification difficulties might be resolved by a clearer definition of enhancement. Nick Bostrom defines enhancement as “[a]n intervention that improves the functioning of some subsystem of an organism beyond its reference state; or that creates an entirely new functioning or subsystem that the organism previously lacked.” Bostrom further defines the reference state upon which enhancement is based on objective standards that characterize the normal functioning of an average, non-diseased person.42 Applying Bostrom’s normal reference state criteria will assist in classifying grey area cases such as those involving growth hormone for short stature children by suggesting that therapeutic intervention will bring these children to the median height for their age and gender, and that further enhancement will bring them significantly above such height. Yet the definition of enhancement that we have just encountered is only one of two main approaches toward the therapy/enhancement distinction that define normality in highly differing conceptual frameworks. The first, the objectivist approach, ascribes to medico-biological definitions, while the second, the subjectivist approach, sees both health and illness as a cultural constructs.43
III) The Subjectivist Approach to Therapy/Enhancement Distinction
As far as the subjectivist approach is concerned, the system of definitions we use to describe health and illness in our cultural context reflect our norms, customs, and morality. An ill person can be defined as one who deviates from common norms, whereas a healthy person falls within their scope. For instance, whereas one culture
41 Maartje Schermer, “The Dynamics of The Therapy-Enhancement Distinction: Adhd as a Case Study” (2007) 79 Philosophica 25 at 27. 42 Nicholas Bostrom, "Dignity and Enhancement" at The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office 2008) at 180. 43 David B Resnik,”The Moral Significance of The Therapy- Enhancement Distinction in Human Genetics”(2000) 9 Cambridge Quarterly of Healthcare Ethics 365 at 366. 27 might view a schizophrenic as “gifted,” “spiritual,” or “unique,” another culture might label that same schizophrenic as “mentally ill.”44
Mental illness represents merely one extreme in the spectrum of conditions. It is a spectrum which is hard to define objectively. Conditions such as mental illness are filled with cultural meaning and are more prone to social construction. There is no objective criteria with which to judge such cases. Clear subjectivity does not exist in a large portion of medical cases. Carl Eliot argues that from the perspective of a subjectivist approach, when a severe condition such as disease or disability causes suffering, and is thereby addressed by medical care, the treatment would be classified as therapy, and not enhancement, as long as the intervention is curative.45
The subjectivist approach asserts that not only do our health-defining norms fluctuate according to time, place, and context, but that the actual practice of therapy and enhancement transforms them. Prevailing social standards will be transformed as the practice of prenatal genetic intervention becomes ever more popular. The bar will be raised for defining a newborn’s ‘health’ and ‘normality.’ An upward shift in social standards will lead to an increasing classification of enhancement as therapy. A well- known sociological phenomenon, known as ‘small change tolerance effect,’ will follow, from slow and gradual market penetration of prenatal enhancement technologies. The potential shifting of the cultural standards of therapeutic enhancement raises the prospect of ‘a slippery slope.’ A legal method attuned to the difficulties of the subjectivist approach can help to avoid the perils of such ‘a slippery slope’, however, by way of an objective corrective, supplied by medical science. Such a corrective would avoid the indeterminacy of fluctuating cultural standards.
44 IbId. 45 Carl Elliott," Enhancement Technologies And Identity Ethics" (2004) 41: 5 Society 25 at 28. 28
IV) The Objectivist Approach to the Therapy/Enhancement Distinction
The objectivist approach might avoid many of the difficulties that characterize subjectivist accounts by making the classification between therapy and enhancement independent of prevalent cultural norms.46 The objectivist approach defines both ‘health’ and ‘disease’ as concepts with empirical, quantifiable, and factual bases in biomedical science. The term ‘normal’ is not defined in any value-laden, culturally-subjective manner, but in pure statistical terms that measure human functioning on a quantifiable scale.47 A person might suffer from a disease if her body failed to perform a necessary physiological function according to a normal quantifiable range measured statistically in a comparable reference population. A particular level of cholesterol may be clogging her arteries, for example, by impairing her heart’s ability to pump blood. 48
Buchanan, who subscribes to an objectivist approach, suggests a classification of the therapy/ enhancement distinction according to the motives of genetic intervention.
Genetic intervention is motivated either by reason of therapy or by reason of enhancement. Replacing a gene linked with sub-normal cardiac functioning would constitute therapy; improving a heart’s stamina beyond normal functioning, would constitute enhancement. Such a distinction, based on intention, clearly guides today’s medical profession in distinguishing, for example, between plastic surgery for an individual whose body has been disfigured in a motor vehicle accident, and a person who looks younger than his actual age, but wishes to obtain an even younger look by turning to a face lift procedure.
46 Nicholas Agar, Designer Babies: Ethical Considerations, online: actionbiosceince.org < http://www.actionbioscience.org/biotech/agar.html>. 47 David B Resnik, ”The Moral Significance of The Therapy- Enhancement Distinction in Human Genetics”(2000) 9 Cambridge Quarterly of Healthcare Ethics 365 at 366. 48 Supra n.46. 29
V) Conclusions
The Biomedicine Convention distinguishes between the permissible and impermissible applications of genetic interventions by way of the therapy/enhancement distinction.
The therapy enhancement distinction debate contains two contending approaches, the objectivist and the subjectivist. We have seen that the subjectivist approach is particularly prone to cultural relativism in the legal process, leading to certainty and predictability.
For these reasons, I have suggested that as far as legal decisions are concernd, would do better to follow an objectivist approach, which draws on empirical and quantifiable definitions derived from medical sciences.
The main advantage of establishing the law upon an objectivist definition of health is the increase of legal certainty in the application of the therapy/enhancement distinction.
The objectivist approach opens the door for expert evidence from physicians and scientists, and reduces the discretionary range of judges. Leaving the distinction solely to judges, who are not medical experts, will inevitably result in an appeal to a subjectivist understanding of health, which, in turn, will result in legal uncertainty, and worse, the potential dissolution of the therapy/enhancement distinction. However, despite its advantages, the objectivist approach cannot resolve all the difficulties that might arise from attempts to use the therapy enhancement distinction. Bright line rules that serve as an approximation of the classification can help to resolve some of the inevitable ambiguities of working directly with the therapy/enhancement distinction. In any case, the distinction will be highly complex and might yield ambiguous results, even if some counteractive measures are taken.
The best regulatory approach would be to entrust an assisted reproduction agency with the responsibility to promulgate a closed list of permissible therapeutic conditions for genetic testing. There are many benefits to this regulatory approach. Such an 30 approach would focus on severe diseases that are well within the therapeutic side of the spectrum, and would be careful not to breach the therapy/enhancement distinction.
However, some countries may not be able to afford an assisted reproduction agency under the current fiscal climate, however. Under such circumstances, these countries would be well advised to ascribe to the objectivist approach to the therapy/enhancement distinction. 31
Chapter Three The Background, Features, and the Key Principles
of the Biomedicine Convention
I) Background to the Council of Europe and the Biomedicine Convention
The array of challenges that arises from the rapidly advancing biomedical sciences are addressed in one of the most comprehensive international human rights legal instruments, the Convention on Human Rights and Biomedicine (1997). The drafting of the Biomedicine Convention was initiated in 1990 in an attempt to reach an international law consensus mediated by the Council of Europe.49 The
Council of Europe is an international organization, whose aim is to foster democracy and to strengthen human rights throughout Europe. The Council of
Europe has 47 member states and more than 800 million inhabitants in its sphere of operation. The institutions of the Council of Europe include the Committee of
Ministers, (a forum for the foreign ministers of members states), the
Parliamentary Assembly, and the European Court of Rights in Strasbourg.50 The
Council of Europe’s Biomedicine Convention has established common legal standards for biomedicine throughout Europe.
II) The Legally Binding Nature of the Biomedicine Convention
49 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 14(1). 50 Aline Royer, The Council of Europe, (Strasbourg: Council of Europe, 2010) at 8. 32
The Council of Europe has created an international legal instrument that is fully dedicated to the field of bioethics. One of the greatest merits of the Council’s efforts in this regard is reflected in the legal status of its Biomedicine Convention. The
Biomedicine Convention’s ‘hard law’ status differs, for example, from UNESCO’s “soft law” status. 51 The legally binding status of the Council of Europe’s Biomedicine
Convention is a direct result of the ratification of the conventions in national law, which are presently enacted in 30 European nations. Among them are major actors on the continental stage – countries such as France, Spain, and Switzerland.52 The signatory countries adopted the Biomedicine Convention’s standards through the intermediary of a ratifying national law, which overlays the convention’s standards with detailed regulation.
Although Article 1 asserts that signatories are responsible for the implementation of the standards set in the Biomedicine Convention, some of the convention’s norms, mainly those of a prohibitory type, may have a self-executing effect in the national law. For example, norms that have immediate efficacy are the requirement of informed consent in
Article 5; these norms are not to be discriminated against based on the provision for ‘genetic makeup,’ outlined in Article 11. However, the Biomedicine Convention lacks sufficiently deterring adjudicatory force due to the lack of suitable sanctions that are not in the range of responsibilities of the convention itself, but the signatory states themselves.53 The signatory states are also in charge of enforcing their obligation under the Biomedicine Convention in their own jurisdiction. The Council of Europe provides additional oversight by imposing on the members a system of state reports, but the convention does not allow for litigation before the
51 Roberto Andorno, "The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law" (2005) 2 Journal of International Biotechnology Law 133 at 135. 52 Council of Europe, Convention for the protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine CETS No,: 164, online: Council of Europe,
European Court of Human rights in Strasbourg, unless the violations of the convention breach the entrenched rights of the European Convention on Human Rights 1950(ECHR).54
III) The Centrality of Human Rights in the Biomedicine Convention
National law plays a leading role in translating human rights into concrete legal obligations.55 The Biomedicine Convention establishes the core human rights obligations.
In addition to such obligations, member states implement more detailed regulation to the complex bioethical challenges at hand. The Biomedicine Convention aims to mitigate such challenges arising from the potential misapplication of biomedical technologies, which may lead to the infringement of some of the most basic human rights. The
Biomedicine Convention has adopted the strategy of a human rights framework for the purpose of proliferating consensual legal standards to member nations. A variety of nations are brought together by the same human rights entitlements. These entitlements provide moral guidance in a divided world of regional ethics. The ability of the different
European member nations to agree upon a common human rights framework in regards to biomedicine is a significant achievement in international law.56 The marriage of international human rights and bioethics in the Biomedicine Convention is mutually beneficial.
Human rights are enriched by the language of bioethics, and bioethics are enriched by a comprehensive and enforceable legal framework to safeguard human rights.57) Dignity aoreple of Biomedicine Convention
The primary aim of the Biomedicine Convention is the protection of human dignity.
The centrality of this protection is immediately evident from the reference to it in the
54 S Negri, Self-Determination, Dignity and End-of-Life Care: Regulating Advance Directives in International and Comparative Perspective (Leiden: Martinus Nijhoff 2012) at 58. 55 Ibid at 136. 56 Ibid at 143. 57 Judit Sándor, “Human Rights and Bioethics: Competitors or Allies? The Role of International Law in Shaping the Contours of a New Discipline” (2008) 27:15 Medicine and Law 15 at 27. 34 title of the convention itself – the Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine.58 Although the reference to human rights includes the important right to human dignity, the right to human dignity is mentioned separately, in the text of the Convention, as well as in its
Explanatory Report. Section 9 of the Explanatory Report asserts that, “The concept of the human being has been used because of its general character. The concept of human dignity, which is also highlighted, constitutes the essential value to be upheld. It is at the basis of most of the values emphasized in the Convention."59 The preamble of the
Biomedicine Convention refers to the concept of human dignity three different times.
The first reference states the general principle: “[c]onvinced of the need to respect the human being both as an individual and as a member of the human species and recognising the importance of ensuring the dignity of the human being … ” The second reference is to the potential risks: “[c]onscious that the misuse of biology and medicine may lead to acts endangering human dignity … ” The third reference addresses the necessity of legal means to preserve ends: “[r]esolving to take such measures as are necessary to safeguard human dignity and the fundamental rights and freedoms of the individual with regard to the application of biology and medicine … ”60 A member of the drafting committee affirms the centrality of dignity by commenting that “it was soon decided that the concept of dignity, identity, and integrity of human beings/individuals
58 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 8. 59 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 9. 60 The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Preamble. 35 should be both the basis and the umbrella for all other principles and notions that were to be included in the Convention.“61
The preamble of the convention makes a direct reference to other prominent international instruments, the most important of which is the ECHR. The European
Court of Human Rights has interpreted dignity in Article 3 in ECHR as having a broad ambit, ranging from a thin meaning of prohibiting harm to life and torture *as it reduces the person to its body) to a thicker interpretation that extends to preserving aspects of one's personality and one's capacity to flourish.62
IV) Protected Groups under the Right to Dignity
Although the Biomedicine Convention focuses on threats to the dignity of genetically modified people, and is less focused on the embryonic stage, some provisions are made to recognize embryos themselves in the context of genetic enhancement. Article 1 is designed to protect 1) the “dignity and identity of all human beings” and 2) the guarantee that everyone, without discrimination, show respect for embryonic integrity. This distinction between human beings and “everyone” might look odd at first glimpse, yet a more thorough examination reveals a reason behind the distinction. Article 1 deliberately avoids a clear definition of “human beings,” which is a task for national law.
Furthermore, Article 1 exposes a deliberate ambiguity in the legal status of embryos and the beginning of their personhood.63 Disagreement between nation states has led the drafters to embrace two different terms to describe “subjects” of protection. The first of
61 Johanna K Nieuwenkamp, “The Convention on Human Rights and Biomedicine”, in: J D Rentdorff and P. Kemp (eds.), Basic Ethical Principles in European Bioethics and Biolaw, vol. II, (Barcelona: Centre for Ethics and Law, 2000) at 329. 62 Stephen Riley "Human Dignity: Comparative and Conceptual Debates" (2010) 6:2 International Journal of Law in Context 117 at 124.
63 Judit Sándor, “Human Rights and Bioethics: Competitors or Allies? The Role of International Law in Shaping the Contours of a New Discipline” (2008) 27:15 Medicine and Law at 27. 36 these terms is “human being” (être humain in French), and the second is “everyone” (toute personne in French). No reflection is provided on whether or not these two terms are synonymous.64 The similar distinction is also employed in Article 12, which prohibits genetic testing for non-therapeutic purposes. Article 12 includes the words “subjects” instead of the prevalent term “human beings” to denote those whose dignity is protected.
The use of the word “subjects” indicates intent to include embryos under the ambit of the article without expressing an opinion as to whether or not they ought to be recognized as humans.65 Additionally, Section 19 of the Explanatory Report asserts that it is “a generally accepted principle that human dignity and the identity of [a] human being
[has] to be respected as soon as life [begins].”1 Section 19 grounds the view that both the identity and dignity of an embryo should be protected from the moment of conception.66
This thesis is not confined to a case analysis of embryos, however, but with the altered persons these embryos will become after genetic manipulation has taken place.
Unlike the utilization of embryos for research purposes only, (e.g. as in cases of abortion), pre-implementation genetic diagnosis and germ-line enhancement result in the birth of living babies. The distinction between real persons and potential persons is not fully necessary in the context of the birth of a genetically enhanced newborn.
The dignity-centered ethical analysis in this thesis does not include any discussion about the potential destruction of fetuses and embryos for reproductive and/or research purposes. The focus of the Convention’s rationale, rather, (and, in turn, of this thesis), is on the violation of the right to dignity of persons born as a result of genetic manipulation. The principle that prohibits the instrumentalization of persons in the
64 Roberto Andorno, “The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law” (2005) 2 Journal of International Biotechnology Law at 137. 65 June M Z Makdisi, “The Protection of Human Life in the European Council’s Convention on Biomedicine” (2007) 7:1 The National Catholic Bioethics Quarterly 29 at 33. 66 Gilbert Hottois, “A Philosophical and Critical Analysis of the European Convention of Bioethics” (2000) 25:2 Journal of Medicine and Philosophy at 134. 37
Biomedicine Convention does not refer to embryos as such, but to the children and adults they will grow to be after genetic manipulation. Section 14(1) in the Explanatory
Report regarding germ-line modifications clearly addresses future persons as such, and not merely as embryos, as it proclaims the right of dignity of future generations.67 The legal scholar Roberto Andorno confirms that the rights of future generations are clearly recognized in the Biomedicine Convention.68
67 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 14(1). 68 Roberto Andorno, "The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law" (2005) 2 Journal of International Biotechnology Law at 140. 38
Chapter Four
Kant’s Philosophy of Dignity as an Underlying System of
Thinking Behind the Biomedicine Convention
I) Introduction
Kant’s moral philosophy provides both an illuminating conceptual system and a precise analytical tool for understanding human dignity. I distinguish in my analysis of Kantian dignity between three discrete yet interrelated concepts. I show that the Biomedicine
Convention encompasses all three of these interrelated concepts. Firstly, the concept of human dignity is intrinsic to human dignity and cannot be priced based on the degree to which it serves the desires of others. Secondly, the concept that human beings must always be treated as ends and not as mere means assures that persons are not turned into mere instrumental objects in violation of their dignity. Thirdly, the concept of respect for the dignity of individual autonomy allows a person to act freely in accordance with his/her life choices.
Kant’s philosophy of dignity holds that respect for human dignity is an utterly inviolable duty that should not be disregarded even if potential consequences appear beneficial. Kant’s philosophy of dignity has, however, been contested by a consequentialist theory, which asserts that human dignity is a property bestowed upon persons by an act of social attribution. The Biomedicine Convention nevertheless protects dignity as a defining feature of all humanity. 39
II) The Misconception of Dignity as an Obscure and Meaningless Value
Human dignity is very often portrayed in the current bioethical literature as an obscure and even meaningless value, one that cannot sufficiently guide ethical considerations.
“The concept of dignity is itself vacuous,” writes one critic. “As a legal or philosophical concept it is without bounds and ultimately is one incapable of explaining or justifying any narrower interests … the term is so elusive as to be virtually meaningless.”69 “In fact,” writes another critic, “it has been suggested that human dignity is used merely as a slogan, or as a vague placeholder for a variety of imprecise fears about socially controversial science.”70 This sort of criticism, which completely rejects the concept of human dignity, wholly ignores the centrality of the value both in history and in scholarship.
The concept of human dignity points to a host of contending views. Each of these views helps to disperse the clouds of ambiguity surrounding the concept, thereby illuminating it in a clearer, more detailed manner. 71 One of the most detailed and influential analyses of dignity was developed by Immanuel Kant.
III) Background to Kant’s Philosophy of Dignity
Immanuel Kant (1724-1804) was a German philosopher and a central figure of the 18th
Century Enlightenment.72 Kant’s work reflects core Enlightenment ideals that have helped to reinvigorate a variety of modern philosophical schools, such as idealism, romanticism, and empiricism. Kant’s philosophy has greatly influenced many prominent
69 Bagaric Mirko & Allan James, “The Vacuous Concept of Dignity” (2006) 5:2 Journal of Human Rights 257 at 260. 70 Ubaka Ogbogu & Timothy Caulfield, “Human Dignity and Biotechnology Policy” in Paul Atkinson, Peter Glasnear & Margaret Lock, eds, Handbook of Genetics & Society: Mapping the New Genomic Era (London: Routledge, 2009) at 450. 71 Jack Donnelly, Human Dignity and Human Rights, Online: Swiss Initiative to Commemorate the 60th Anniversary of the UDHR,
Popper, John Rawls, and Robert Nozick. Kantian philosophy still plays a pivotal role in today’s academic research in many disciplines including moral, political, and legal theory.73 Kant’s contributions to the development of legal theory [are great in number and magnitude and] include the criminal law concept of retributive justice, the human rights law principle of universality, as well as his philosophy of human dignity, which underlies the core principles of the European Biomedicine Convention.
Kant’s philosophy of human dignity provides the Biomedicine Convention with a comprehensive system of thinking including relevant aspects of human rights and bioethics. The idea at the heart of Kantian philosophy of dignity is that a human being should never be treated as a mere instrument of another person’s will. In the Groundwork for Metaphysics, Kant writes the following: “That which constitutes the condition under which alone something can be an end in itself has not merely a relative worth, i.e., a price, but has intrinsic worth, i.e., dignity.”74 Commentator Allen Wood writes that [what follows from Kant’s definition is that morally wrong actions are those that express disrespect or contempt for persons by not valuing them as ends in themselves.75 It is important to note the leading interpretation of Kant by Michael Novak that expounds the Kantian duty to treat others as ends in themselves and not as mere instruments applies to all homo sapiens, including human embryos. 76
This chapter will elaborate on the key principles of Kant’s philosophy of dignity, and go on to show how they integrate in a wholly compatible manner with the Biomedicine
73 Supra N.72 at el. 74 I Kant, Foundations of the Metaphysics of Morals, (Indianapolis: Bobbs-Merill, 1959) at 73. 75 A Wood, Kant's Ethical Thought, (Cambridge: Cambridge University Press, 1999) at.62. 76 Michael Novak, The Stem Cell Slide: Be Alert to the Beginnings of Evil. In Stem Cell Controversy: Debating the Issues. (Amherst, NY: Prometheus Books, 2001) at 112. 41
Convention’s definition of human dignity in the context of newborn genetic interventions.
IV) Human Dignity as Intrinsic and Incommensurable
In his Groundwork for Metaphysics, Kant presents two interrelated concepts that serve as the supporting pillars for his philosophy of human dignity: intrinsic worth and incommensurability. 77 Kant has described these two concepts as follows: “The respect I bear others or which another can claim from me is the acknowledgement of the dignity of another man, i.e., a worth which has no price, no equivalent for which the object of valuation could be exchanged.”78
Kant argues that inherent worth (Würde) differs from extrinsic worth. Moral protection of the human being as an end-in-itself is part of what Kant refers to as ‘the kingdom of ends.’ The kingdom of ends is a meta-concept of Kantian philosophy which signifies humanity as a community of rational beings under a universal moral law.79
Humanity’s capacity for freely willed rationality enables one to know, more often than not, when one is in service of another person’s ends. Humans who reflect their inherent worth toward their fellow humans treat them as their equals.80 Kant asserts that
“humanity itself is dignity,” i.e. that the inherent dignity of a person is not based on the value society assigns according to the degree of excellence exhibited, but that dignity is,
77 Daniel L Tobey, “What’s Really Wrong With Genetic Enhancement: A Second Look At Our Posthuman Future” (2003) 6:1 Yale Journal Of Law & Technology at 131. 78 I Kant, Foundations of the Metaphysics of Morals, (Indianapolis:Bobbs-Merill, 1959) at 58. 79 Barbara Secker, “The Appearance of Kant's Deontology in Contemporary Kantianism: Concepts of Patient Autonomy in Bioethics” (1999) 24:1 J Med Philos 43 at 47. 80 Matti Hayry, “Another Look at Dignity” (2004) 13 Cambridge Quarterly of Healthcare Ethics 7 at 9. 42 in fact, inseparable from humanity.81 Dignity is forever present in the human being, even in the most hardened criminal.82
Article 2 of the Biomedicine Convention states that the right to human dignity is inherent in all persons regardless of their condition. The commitment to inherent dignity noted in the ‘primacy principle’ of Article 2 asserts that human dignity “shall prevail over the sole interest of society or science” and over private economic interest.83 This primacy principle first appeared in the 1964 version of World Medical Association Declarations of
Helsinki (Ethical Principles for Medical Research Involving Human Subjects). The Declarations of
Helsinki introduced the primacy principle as a response to the Nuremberg trials, which condemned the experimentation of Nazi doctors and their demeaning and dehumanizing treatment of human persons. The legal entrenchment of the primacy principle is meant to ensure that ‘‘the person does not have to reach any functional standard to be valuable as a person or to be treated with full respect.’’84 The core assumption of the primacy principle is that every person has an intrinsic worth, a worth which can never be subjugated to external purposes such as private economic interests, societal programs, or scientific progress.85
A second part of Kant’s moral philosophy of dignity emphasises the principle of incommensurable worth. Kant has described the notion of incommensurability in these words: ‘‘[i]n the kingdom of ends, everything has either a price or a dignity. Whatever has a price can be replaced by something else as its equivalent; on the other hand, whatever is
81 Adam Schulman, “Bioethics and the Question of Human Dignity” in The President Council on Bioethics, Human Dignity and Bioethics, (Washington: Government Printing Office, 2008) at 10. 82 H Spiegelberg in eds. R Gotesky & E Laszlo, Human Dignity: A Challenge to Contemporary Philosophy. In: Human Dignity. This Century and the Next, ( New York: Gordon and Breach, 1970) at 39. 83 The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Article 2. 84 Colin Parker, “The Moral Primacy of the Human Being” (2010) 36:9 Journal of Medical Ethics 561 at 563. 85 Roberto Andorno, “The Dual Role of Human Dignity in Bioethics” (forthcoming) Medicine, Health Care and Philosophy 1 at 3. 43 above all price, and therefore admits of no equivalent, has a dignity.’’86 Dignity is the feature of things that have intrinsic worth, and not of objects with extrinsic value that are characterized by their fungibility, or in Kant’s words, by mere “market value” (Marktpreis).87
The act of assigning market prices that attempt to determine exchange values to other market goods to dignity inhibiting things treats them as merely means but as an end that is mitigated by the placing exchange values on people and their dignity.
When something is identified as incommensurable, it does not signify that is cannot be priced, but according to Kantian thought, that it should not be priced. Cass Sunstein, an prominent law and economics figure, which is also critical of his school, largely agrees that some human goods are incommensurable and that the law should recognize them as such. Sunstein explains that we cannot attach a price to something incommensurable without: “doing violence to our considered judgments about how these goods are best characterized.”88 For instance, placing price tags on newborns distorts our perception of their dignity since such practice collides with our moral beliefs and might diminish from the incommensurable worth of newborns.89 Humans are unique, priceless and have an incommensurable worth that is not merely a relative value according to the degree they can be an instrument to the desires of others. All Humans, including the weakest, least loved, and most marginalized are all valued far beyond any market good in the world, as luxurious and expensive it can be, since human dignity must always be cherished above all and is priceless.90
86 I Kant, Foundations of the metaphysics of morals, (Indianapolis: Bobbs-Merill, 1959) at 57.. 87 John Finnis, “ legal Enforcement of Duties To Oneself :Kant v. Neo-Kantian” (1987) 83:433 Colum LRev 433 at 441. 88 C R Sunstien, Free Markets and Social Justice (New York: Oxford University Press, 1999) at 80. 89 Daniel L Tobey, “What’s Really Wrong With Genetic Enhancement: A Second Look At Our Posthuman Future” (2003) 6:1 Yale Journal Of Law & Technology at 138. 90 Ibid at 131. 44
Attempting to assign exchange values to persons, according to the degree they serve the instrumental ends of others, contradicts the definition of dignity as articulated in
Article 1. Implicit in Article 1 is the notion that persons have human dignity in a Kantian sense. This means that they are incommensurable, that they are priceless, and that their self-worth cannot be substituted. Any judgment that made of a human being must be fully independent of their genetic make-up. Valuing a person on the basis of the quality of their genome violates the dignity which is inherently theirs by virtue of being human.91
V) The Kantian Duty to not Instrumentalise
The claim that a person’s inherent worth is not determined by the degree to which he/she serves the desires of others leads to the straightforward conclusion that the person in question ought to be treated as an end, and not as a means.92 Kant’s categorical imperative posits that one is obliged to “act in such a way that you always treat humanity, whether in your own person or in the person of any other, never simply as a means, but always at the same time as an end.”93 For Kant, treating persons as pure ends obliges us never to manipulate persons for our own purposes, no matter how well intended such purposes might be.94
Yet, according to some, Kant’s formulation of the duty not to treat persons as mere instruments is far too broad. Two authors that agree with this claim, Deryek Beylveld and Robert Brownwood, argue that the duty in question should be reserved for cases where the instrumentalisation is clear and has substantial gravity.95 One example Beylveld and Brownwood give is the denial of self-determination, a core element of the analysis
91 Ludger Honnefelder, “Bioethics and Human Genetics: Consensus Formation in Europe” (2001) 3:1 Ethics & Politics 1 at 6. 92 J Rachels, The Elements of Moral Philosophy, (New York: McGraw-Hill Higher Education, 2006) at 115. 93 I Kant, Groundwork of the Metaphysics of Morals (Harper and Rowe, 1964) (1948) at 44. 94 Ibid 95 Deryek Beylevald & Roger Brownsword, "Human Dignity, Human Rights, and Human Genetics" (1998) 61:15 The Modern Law Review 661 at 668. 45 discussed in greater detail in the fifth section of this chapter. Some authors have expressed a need to further elucidate the Kantian duty to avoid instrumentalisation by clarifying the concept of mere use. A common reply is that one is obliged to treat one’s fellow rational agents in a manner which fully respects their autonomous wills. For instance, one ought not to borrow money from a friend, (which will ultimately be used for self-gratification), by way of lying. Additionally, one ought not to take the money without the consent of the friend, and/or without taking into consideration the friends’ ends. Kant does not imply that persons can always be treated as ends in themselves, but rather that they should never be treated only as means. For instance Kant writes " [H]e who is thinking of making a lying promise to others will see at once that he would be using another human being merely as a means, without the latter at the same time containing in himself the end. For he whom I propose by such a promise to use for my own purposes cannot possibly assent to my mode of acting toward him, and therefore cannot himself contain the end of this action"96
The Kantian principle of non-instrumentalisation is present at the heart of Article 1 of the Biomedicine Convention; it is also present in other European constitutions.97 For instance, the reference to human dignity in Article 1 of the Charter of Fundamental Rights, widely approved throughout Europe, is interpreted along the lines of the Kantian principle that forbids instrumental use of persons to the ends of others.98 The legal application of the anti-instrumentalisation principle constitutes a duty towards human beings not to degrade them to the status of mere objects or to treat them as mere
96 I Kant,. Foundations of the metaphysics of morals, (Indianapolis:Bobbs-Merill 1959) at 88. 97 Ismini Kriari-Catranis, "The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine”, (2002) 12:1 Eubios Journal of Asian and International Bioethics at 90. 98 Christian Starck, “Embryonic Stem Cell Research according to German and European Law” (2000) 7:7 German Law Journal 625 at 638. 46 instruments with a “substitutable dimension.”99 Roberto Andorno asserts that predetermining the genetic characteristics of future newborns treats them as mere means to satisfying the desires of third parties, and infringes upon the Kantian duty to avoid treating persons as mere instruments.100
The French dwarf throwing case illustrates the continental European contra- instrumentalisation Kantian approach to human dignity.101 In this case, Manuel
Wackenheim, one of the dwarfs has pleaded against the police ban on dwarf throwing, including his participation as a tossing object in a competition is unconstitutional.102 The
Council D'état has decided to uphold the constitutionality of the police ban and revoked the informed consent the person who has been determined to have been treated in an the undignified manner merely as means. The ruling affirmed that human dignity is an ineliable right that cannot be revoked, and that even consent cannot nullify an action that objectifies a person and humiliates a human being.
VI) Kant’s Notions of Autonomy and Self-Determination
Kantian philosophy places a great deal of emphasis on autonomous choices due to the capacity of human beings to self-legislate, self-determine, and self-govern their lives through the power of their rational wills. Autonomy protects the ability of moral agents to decide upon the ends they pursue as free and rational beings.103 Kant defines
99 Supra note.28. 100 Roberto Andorno, “Dignity of thae Person in the Light of International Biomedical Law” (2005) 55:1 Medicina e Morale 165 at 157. 101Elizabeth Wicks, "The Meaning of ‘Life’: Dignity and the Right to Life in International Human Rights Treaties" (2012) 12:2 Human Rights Law Review 199 at 209. 102 Case Commune de Morsang-sur-Orge CE, [October 1995] at 372 , 27. 103 John Finnis, “ Legal Enforcement of Duties To Oneself :Kant v. Neo-Kantian” (1987) 83:433 Colum LRev 433 at 444. 47 autonomy in terms of the “dignity of man as a rational creature,” that is, as an obligation to respect a person’s rational capacity as following from the autonomy of his/her will.104
Kant describes the free expression of a person’s moral and rational capacity as “the dignity of autonomy.”105 Autonomy is not simply a matter of one’s personal preferences, but is rather “the ground of the dignity of human and every rational nature.” 106 Charles
Foster echoes the claim that Kantian thought sees the denial of autonomy as a clear violation of human dignity. 107
Thomas Mapps and David Degrazia offer their own account of Kantian autonomy:
“The individual capable of acting on the basis of effective deliberation, guided by reason, and neither driven by emotions or compulsions nor manipulated or coerced by others is, on the Kantian position, the model of autonomy.”108 Autonomy implies not only freedom in the negative sense, as freedom from an external authority, but also freedom in the positive freedom, as freedom for self-determination.109 As the capacity for self- determination, then, autonomy requires the ability to freely exercise one’s own will without being unduly bound to the wills of others. Faden, Beauchamp and King mention that the Kantian formulation of autonomy was central for later developments of the legal-ethical concept of informed consent.110 Richards adds that: “The focal weight … given to the freedom and rationality of the individual as the creator of his own life is the
104 Mark Komrad, “In a Defence of Medical Paternalism: Maximizing Patient’s Autonomy” (1983) 9:1 Journal of Medical Ethics 38 at 38. 105 P Guyar, Kant's Groundwork of the Metaphysics of Morals: Critical Essays (Lanham: Rowman & Littlefield, 1998) at 237. 106 I Kant,. Foundations of the metaphysics of morals. (Indianapolis:Bobbs-Merill 1959) at 37. 107 C Foster, Human Dignity in Bioethics and Law, (Oxford:Hart 2011) at 38. 108 T Mappes & D DeGrazia, ,Biomedical Ethics, (New York: McGraw-Hill. 1996) at 121. 109 Stanford Encyclopedia of Philosophy, Kant's Moral Philosophy, online: Stanford Encyclopedia of Philosophy
The human right to dignity upon which the Biomedicine Convention is established enshrines the “Kantian notion of respecting the individual’s right to make autonomous choices.”112 The convention’s protection of autonomous choice is derived from the assumption that human beings must always be treated as an ends in themselves. The duty to avoid treating people as mere means takes into consideration both the physical and the mental aspects that are inseparable parts of self-determination.113 The moral subject requires protection of her ability to develop her personality free form interventions, as well as protection of her right to self-determine her own life path. Both of these protections point to inviolable aspects of the human condition. The respect for human dignity, which is tied to the notion of autonomous choice, is reflected in the Biomedicine
Convention’s chief right to self-determination. The right to self-determination is most apparent in Article 5 of the convention which requires the informed consent of a patient prior to medical interventions.
Likewise, Article 13 prohibits germline intervention on the grounds that manipulation of the human genome will affect future generations insofar as their consent cannot be reasonably presumed and insofar as their right to self-determination will be violated.114 I will in forthcoming chapters work out the implications of an application of the right to self-determination to an unhindered development of future persons and to genetic interventions that alter identity-related genes. Genetic interventions such as these
111 DRichards, Sex, Drugs, Death, and the Law (Totowa: Rowman and Littlefield, 1982) at 274. 112 L Hagger, The Child As Vulnerable Patient: Protection and Empowerment, (Cornwall: Ashgate, 2009) at 192. 113 Ibid. 114 Ludger Honnefelder, “Bioethics and Human Genetics: Consensus Formation in Europe”(2001) 3:1 Ethics & Politics at 7. 49 have a severe impact upon an individual’s cognitive sense of being the sole author of his/her life. The ability to subjugate one’s life and identity to the wills of third parties is essentially degrading. Instrumental treatment is a gross violation of a human being’s right to what Kant called “the dignity of autonomy.”
The Biomedicine Convention’s core value of dignity and its derivative right to autonomy were established in view of two important concerns about the practice of medicine – medical paternalism and the abuse of medical research and practice. Several ethically problematic instances in medical history have set the cornerstone for creating a legal structure to address bioethical issues through a human rights perspective. The turn to human rights law emerged at the midway point of the twentieth century with the
Nuremberg Code on Human Experimentation, a foundational text which continues to have influence on both bioethics and the law. The concern for the potential abuse of biomedicine, particularly in relation to autonomy, transcends international borders. The quality of human life is a universal issue.115 Human rights are protected in the
Biomedicine Convention as inviolable rights, not sporadically according to a balance of interests.
VII) Dignity as an Inviolable Right under Kantian Deontology
The absolute and inviolable commitment toward the upholding of certain rights, such as the right to dignity, is known in moral philosophy as ‘deontology.’ Deontology (from the Greek, deon meaning ‘duty,’ logos meaning ‘study’) is the judgment of the morality of an agent’s will and action based on their adherence to set rules or duties. Deontology is often understood in contrast to consequential ethics, which asserts that the morality of an action is assessed based upon the outcome it produces. Consequential ethical theories
115 Ibid at 5. 50 will weigh harmful outcomes against beneficial outcomes in order to determine if the overall balance of outcomes is positive (and hence, morally good) or negative (and hence, morally bad). Unlike consequentialism, deontology holds that persons must fulfill their moral duty, even if the apparent consequences are not optimally beneficial.116 According to a deontological approach to ethics, for example, one is not permitted to save the life of another if doing so involves the murder of another person, an act which violates the moral duty not to kill. In the same example, the consequentialist would assess the moral course of action by weighing the value of one person’s life against the value of an act of murder. Deontology does not view morality through the lens of the good, but through the lens of the right. Doing what is right is synonymous, in deontological terms, with fulfilling one’s moral duty.
In Kantian philosophy, moral duty is derived from a formulation known as ‘the categorical imperative’ which advises to “[a]lways act in such a way that you can also will that the maxim of your action should become a universal law.”117 The universal law stems not from the exercise of humanity’s rational capacity to devise certain rules to guide certain persons in certain situations; it takes into consideration the duties that ought to guide all human beings in their general, day-to-day conduct.
As we have seen, human beings have a moral duty to perpetuate human dignity by treating people as means rather than as ends. The Kantian command to never use a person as a mere means reflects a deontological stance on the issue of human dignity. The duty to respect personal autonomy, as derived from the categorical imperative, is itself an obligation. From the perspective of deontology, the dignity of autonomy, and the right to self-determination, cannot be sacrificed, if the benefits to the greater good exceed the harms.
116 D Farrow, Ethics, Key Concepts in Philosophy, (Cornwall: MPG books, 2005) at 49. 117 I Kant, Foundations of the Metaphysics of Morals, (Indianapolis: Bobbs-Merill 1959) at __. 51
Deontological protection of inalienable human dignity is present in the core assumptions of the Biomedicine Convention. Article 2 states that human dignity is exulted and protected beyond consideration of financial gain.118 The aim of such a principle is to protect citizens from the exploitation of genetic technology for profit, and/or from the interests of private businesses.119 Protection from financial gain is particularly tied to the Kantian notion of human dignity and its prevention of instrumentalisation. The Kantian non-instrumentalisation principle safeguards from the exploitation of human beings and their DNA as consumer products for financial gain.120
The commodification of future newborns into ‘designer babies’ is another aspect of this tendency.
The deontological reasoning in the rationales of the Biomedicine Convention, reasoning which prefers adherence to duties over consequences, tends to support an absolute ban on enhancement, even when there are clear gains to be had, apart from the potential risks. The deontological approach is evident in the fact that Articles 13 and 14 cannot be suspended by national legislation since they are protected as absolute, non- relative rights. The expression of prohibition in absolute, non-relative terms is indicative of deontological moral reasoning.121 Such unique protection, which very few articles in the convention have received, reveals the extent of the deontological nature of the prohibition on newborn genetic enhancement. Article 12 prohibits non- therapeutic genetic testing in pre-natal and post-natal contexts, with each context representing a different rationale. The ability to suspend Article 12 according to the conditions in Article 26(1) appears to apply only to the rationale of post-natal genetic
118 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 14(1). 119 Stephen P Marks,” Tying Prometheus Down: The International Law of Human Genetic Manipulation” (2002) 3:1 Chicago J international L 115 at 118. 120 Ibid. 121 D M Brochert, Encyclopedia of Philosophy Supplement, (New-York:Simon & Schuster MacMillian, 1998) at 126. 52 testing. Article 26(1) allows states to temporarily suspend Article 12, for such purposes as the prevention of public health or public safety, purposes that are necessary in a free and democratic society. The temporary suspension of relative rights is also subjected, according to the European Court of Human Rights proportionate to the legitimate aim pursued.122 These two further judicial review bolstering conditions also apply in the context of the Biomedicine Convention.123 Article 26(1) applies in a post-natal context to
‘non-health diseases,’ and must meet the additional precondition of proportionality to the legitimate aim pursued”. In view of the nature of restrictions that apply to genetic testing in a post-natal context, it would seem that prenatal genetic enhancement cannot be justified for public health or public safety in a free and democratic society as stipulated by
Article 26(1).
A more holistic, teleological interpretation of Article 12 leads to the conclusion that, with respect to genetic testing, the pre-natal context should be in full accordance with the prohibition on newborn genetic enhancement, as expressed both in Article 13, which prohibits newborn germ-line genetic enhancement, and in Article 14, which prohibits sex selection for the aim of preventing designer babies. The articles relating to prenatal genetic modification inviolably prohibit such alterations on newborns.
VIII) A Contending View to Kantianism: Attributed Dignity Theory
One of the common criticisms against the use of ‘dignity’ in bioethics is that such a concept is incoherent and self-contradictory. Julia Davis argues that “[t]he concept of
122 W v. the United Kingdom, [8 July 1987], European Court of Human Rights at 27 Series A, no. 121-A.
123 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Para 159. 53 human dignity does not give us enough guidance ... it has different senses and often points us in opposite directions.”124 As we shall see in this thesis, however, although
‘human dignity’ points in opposite directions, this is not a problem with the concept itself, but rather, a result of a complex interplay of differing theories of dignity, including the Kantian. Although this thesis does not have the sufficient breadth to inspect all of the prominent theories of dignity, it will give an account of one such approach, which is often contrasted with Kant’s philosophy, namely, ‘attributed dignity.’ According to the attributed dignity approach, the worth of a human being is assigned to him/her by acts of attribution from peers. An attributed notion of worth is conferred to individuals through their social interaction as an act of evaluation in estimating their capacities, skills, powers, and characteristics.125 For instance, a society in which industriousness is the highest value on the normative scale is likely to attribute the highest worth of dignity to members who are very industrious and have a strong work ethic. In such a labour- intensive society, a person is, from the perspective of attributed dignity, likely to be well- respected. A major exponent of attributed dignity theory was the prominent 17th century
English philosopher, Thomas Hobbes. Hobbes asserted that, “the value or worth of a man is, as of all other things, his price – that is to say, so much as would be given for the use of his power – and therefore is not absolute but a thing dependent on the need and judgment of another.”126 Immanuel Kant was aware of Hobbes’ theory and boldly criticised it by arguing that if human beings are simply a kind of animal among other animals in the kingdom of living beings, we can ascribe a price to them which depends upon their usefulness, like a cow for milk, a mink for its fur, and fish for their flesh. In contrast to Hobbes, Kant argues that rational and moral capacities warrant that human
124 Julia Davis, “Doing Justice in Criminal Law” in Malpas & N. Lickiss,eds “Doing Justice to Dignity in the Criminal Law. In Perspectives on Human Dignity: A Conversation” (Dordrecht: Springer 2007) at 177. 125 Daniel P Sulmasu “Dignity and Bioethics” in The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office, 2008) at 473. 126 T Hobbes, Leviathan (Calgary: Broadview, 2011) at 79. 54 beings be treated as subjects and not as objects, that persons are, as it were, priceless, and should not be assigned to any instrumental values.127
Nick Bostrom, A leading Transhumanist Bioethicist favours a utilitarian brand of attributed dignity, which he dubs “dignity as a quality.”128 According to Bostrom, not only does enhancement of newborns not violate their dignity, the improvement of human faculties in enhanced persons increases the amount of dignity they are due to receive after enhancement. Bostrom disagrees with the view that dignity is at stake in future newborn genetic enhancement, and asserts that a consequentialist calculus which weighs both the positive and negative consequences favours a move towards human enhancement.129 The result of Bostrom’s moral calculus, however, is greatly influenced by his clear preference for
Transhumanist values and techno-optimistic viewpoints, which assume that benefits from human enhancement will necessarily exceed the harms expected from genetic interventions.
Nevertheless, other renowned academics, including consequentialists, assert that genetic interventions will have significant consequences. Some of these consequences include the dignity-violating practice of newborn commodification, genetic predetermination of individual autonomy, a potential exacerbation of income gaps that favour the few and harm the many, and negative impacts on social solidarity. In light of such negative effects, a consequentialist is not likely to view human genetic enhancement as morally good. Hence, the proposition that the human enhancement debate merely reflects a clash between deontological and consequentialist views is incorrect. Still, the theory which underlies the protection of human dignity in the Biomedicine Convention is
Kantian. Kant’s deontological philosophy of inherent dignity rejects the treatment of persons as means to an end, even if the overall balance of consequences is tilted toward the beneficial
127 I Kant, Foundations of the metaphysics of morals. (Indianapolis: Bobbs-Merill, 1959) at 59. 128 Nick Bostrom, “In Defence of Post Human Dignity” (2005) 19:3 Bioethics at 173. 129 Nick Bostrom,”Human Genetic Enhancements: A Transhumanist Perspective” (2004) 37:4 The Journal of Value Inquiry 493 at 500. 55 side. Human dignity is protected under Kant’s philosophy as a cherished, inviolable duty toward the whole of humanity.
IX) Conclusion
Kantian philosophy provides the Biomedicine Convention with a comprehensive system of thinking on how to safeguard the value of human dignity. Kant sees dignity as an intrinsic and invaluable possession of each and every human being. Attempts to evaluate the worth of human beings by attaching extrinsic market prices to them flagrantly contradicts Kant’s notion of intrinsic dignity. Such dignity, as expressed in
Kant’s moral philosophy, is further protected by the duty to always treat persons as ends in themselves and never as mere means. The treatment of human beings as mere instruments in the service of others is a clear violation of the Kantian imperative. Kant’s deontological philosophy protects dignity as an absolute and inviolable obligation to the whole of humanity. One’s duty toward human dignity cannot be circumvented or waived off, even if the consequences at hand are not entirely beneficial. Kant’s philosophy of human dignity is one of many detailed and comprehensive theories associated with the concept. One contending view to Kantian dignity which is often used to support the
Transhumanist Movement in justifying enhancement is a consequentialist version of
‘attributed dignity.’ Attributed dignity posits that dignity arises from acts of social attribution due to the beneficial fulfillment of social norms and/or needs. This perspective on dignity is incompatible with the Kantian view which underlies the
Biomedicine Convention, a view which asserts that human dignity is an inherent and inviolable property of all humankind.
56
Part 3. The Legal Theory Regarding the Threats from
Prenatal Genetic Interventions to Human Dignity
Chapter One
Prevention of Commodification of Human Newborns
I) Introduction
The rise of the modern markets has shifted consumer behavior patterns from mere subsistence to consumption that caters to individual tastes and desires. The industry’s ability to customize products according to consumer tastes will soon reach the reproductive industry through the employment of cutting-edge biotechnological methods. This technology will soon allow the selection of newborn traits such as eye color, skin color, and emotional characteristics. The Biomedicine Convention opposes the application of genetic interventions for enhancement and customization purposes on the grounds that such practices reduce human beings into mere commodities. Turning persons into mere market commodities will inevitably result in the assignment of monetary price tags to the most essential human characteristics, such as empathy, intelligence, and social behavior. The use of genetic make-up to determine the market value of a person conflicts with the inherent and incommensurable sense of self-worth in
Kantian dignity. The dignity of individuals who have already been genetically intervened upon is further violated by the instrumental treatment of predetermining their essential genetic characteristics and identity-related traits according to the views and desires of 57 others. The process of genetically designing children can change a child’s identity and potentiality in such a way so as to radically alter a child’s life path. Such third party direction of the designed child’s life path encroaches upon the child’s right to full self- determination and diminishes the child’s perception of being the sole author of his/her life.
II) The Counter-Commodification Rationale
The rapid developments in biotechnology have enabled consumers to have an increasing level of selection and manipulation over the embryonic genome, according to specified non-medical criteria. Genetic interventions for the purpose of enhancement and customization of the newborns’ genome have raised concerns over the commodification of human beings. The concerns about commodification are also reflected in the common umbrella term “designer baby” that is used to denote inter alia, non-medical uses of genetic intervention in order to achieve desirable traits in newborns.
The Biomedicine Convention addresses the commodification of babies, through its general principles, and through specific provisions restrict prenatal genetic design, as articulated in Articles 12 and 14. On the level of general principle, section 14(1) of the preamble directly addresses concerns about the “prohibition of the use of all or part of the body for financial gain.”130 Additionally, Article 21 states that the human body and its parts shall not be used to give rise to economic gains. For example, the Biomedicine
Convention’s stance against commercialization is reflected in the provision that prohibits patenting the human genome asthis action threatens to commodify life itself. Such commodification turns the human subject into an object, thus degrading essential human
130 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 14(1). 58 dignity.131 The Biomedicine Convention’s Kantian anti-instrumentalization principle applies to genetic manipulation that downgrades human persons to the level of commodities in the service of others.132 The ban on commodification of human beings through the practice of designer babies is directly addressed in Article 14 and Article 12.
Although Article 13 explicitly prohibits newborn genetic enhancement, its rationale relates additionally to other ethical concerns that will be covered in greater detail in the chapters that follow.
Article 14 prohibits the use of pre-implementation genetic diagnosis for the purpose of choosing the sex of a child. The exception to Article 14 is that sex selection is permitted only for therapeutic purposes in cases of high probability of the newborn to develop sex related genetic diseases. The rationale behind Article 14 is hat prenatal selection of an offspring’s sex transforms reproduction into a manufacturing process in which the process of selecting the most desirable child is akin to a consumerist endeavor that further reinforces attitudes towards commodification of future newborns.133 Genetic interventions commodify newborns and violate their human dignity by treating them as mere products.134
Article 14 prohibits social sex selection. It considers it an objectionable common practice that transgresses the boundaries of the promotion of health into the non-ethical realm of enhancement meant to satisfy individual desires. Social sex selection is a further bold step towards the extension of reproductive technology into the realm of genetically enhanced designer babies.135 Social sex selection is likely to set a negative precedent for
131 Stephen P Marks, “ Tying Prometheus Down: The International Law of Human Genetic Manipulation” (2002) 3:1 Chicago J international L 115 at 120. 132 J Burley,. The Genetic Revolution and Human Rights (Oxford: Oxford University Press 1999) at 67. 133 Roberto Andorno, "The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law" (2005) 2 Journal of International Biotechnology Law at 141. 134 .Supra note 3 135 Jackie Leach Scully, Tom Shakespeare and Sarah Banks, “Gift not commodity? Lay people deliberating 59 the selection of other genetic characteristics such as intelligence and athletic abilities.136 A rationale that opposes designer babies as a commodification of human beings might not only apply to sex selection, but to other forms of enhancement, as well. Article 14’s sole focus on the prohibition of social sex selection to address the concerns of commodification has been criticized as a narrow-minded attempt to prevent the practice of designer babies.137
Article 12 of the Convention completely precludes genetic testing for non-therapeutic, enhancement purposes.138 Section 83 in the Explanatory Report regarding Article 12 contains direct reference to pre-natal and pre-implementation genetic diagnosis. It states that such pre-natal reproductive techniques are permissible only for therapeutic purposes.139 The therapy/enhancement distinction that underlies Article 12 is fully coherent with the similar ban on enhancement purposes with that in Article 14 as well as
Article 13’s restriction on human research using germ-line enhancement. Article 12 should be interpreted in light of Section 14(1) of the Explanatory Report concerning the preamble and core principles of the Convention, which sets a “prohibition of the use of all or part of the body for financial gain, restriction of the use of genetic testing, etc.”140
Furthermore, the interpretation of Article 12 regarding genetic testing should be in accordance with Article 21’s prohibition on commodification in general as well as the anti-instrumentalization principle that underlies Article 1 of the Biomedicine Convention.
The standards set in the Biomedicine’s Convention framework, such as the social sex selectiom” (2006) 28: 6 Sociology of Health & Illness at 750.
136 Guido Pennings & Guido de Wert, “Evolving ethics in medically assisted reproduction” (2003) 9:4 Human Reproduction Update 397 at 400. 137 Gilbert Hottois, “A Philosophical and Critical Analysis of the European Convention of Bioethics” (2000) 25:2 Journal of Medicine and Philosophy at 143. 138 Eibe Riedel, “Global Responsiblities and Bioethics: Reflections on the Council of Europe’s Bioethics Convention” (1997) 5:179 Ind. J. Global Legal Stud 179 at 186. 139 Supra note 9 at 184. 140 The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Article 1. 60 therapy/enhancement distinction, underlie the further regulation undertaken by
European-assisted reproductive agencies.141 European regulators have set more restrictive conditions, pertaining to ‘severity,’ ‘lethalness,’ and the ‘closed list model’, in order to prevent over-expansion and abuse of the broad therapy/enhancement distinction.
In France, which ratified the Biomedicine Convention, the Bioethics Act of 1994 and its subsequent amendments are grounded on the same rationale as the Biomedicine
Convention, in preventing the use of genetic technologies to create designer babies.142
Acceding to the Kantian ethical maxim, the Bioethics Act of 1994’s rationale posits that the child’s birth should remain an end in itself. The rationale of the French law is that the use of PGD to prevent the occurrence of serious genetic diseases does not treat the child as means to an end, and that the seeking of genetic interventions in the creation of a designer baby attempts to satisfy non-medical parental desires that constitute an instrumental use of the baby in question.143 In order to further inspect how genetic interventions both commodify and instrumentalize the newborn, we must first turn to a discussion of the conceptual meaning of ‘commodification.’
III) The Definition and Theory of Commodification
‘Commodification’ is defined as the practice of treating things as commodities, i.e. as properties that can be bought, sold, or rented in the market. Under a system of commodification, consumer goods can be reduced to a price, all prices can be compared, and all value is transitive and commensurable. Labeling goods with exchange values
141 Orsolya Varga at el, “Definitions of genetic testing in European legal documents” (2012) 3:2 Journal of Community Genetics 125 at 127. 142 P.-L. Fagniez, J. Loriau & C. Tayar, “Du Bébé Médicament au Bébé du Double espoir, (2005) 33 :10 Gynecologie Obstetrique & Fertilite”at 130. 143 Ibid. 61 produces the required fungibility to administer a comprehensive cost-benefit analysis, and nothing is so sacred as to stand beyond the scope of market logic. The prominent libertarian Robert Nozick argues that with regard to the “genetic supermarket,” the only required restriction on market activity should be rules to ensure free transactions.144
However, the notion of nearly faultless and boundless markets, in which everything can be commodified, is often contested by a host of critical opinion. Margaret Radin and
Madhavi Sunder argue that the commodification process reduces the subject into a mere object. The commodifying person distorts its relations to the objectified person, thus treating something as inalienable as human connection under the auspices of market forces.145 Leon Kass adds that the act of designing babies causes parents to assume the role of consumers; parents manufacture their children in an attempt to control them as though they were custom-made products.146 Such consumerist control is accompanied by a depersonalised treatment of human beings, one that strips away the intimate dignity of the parent-child relationship.147 Sandel further argues that the moral good of human relations is at stake of being degraded when subject to valuation and exchange. The application of market logic to morally good and invaluable relational structures intrinsically corrupts them to a point at which market regulation cannot reverse the damaging outcome.148
The Kantian philosophy of dignity asserts that there is a categorical imperative against treating people as commodities. Kant posits that ‘‘[i]n the kingdom of ends, everything
144 R Nozick, Anarchy, State and Utopia, (New York: Basic Books, 1974) at 315. 145 Margaret J Radin & Madhavi Sunder, “The Object and Subject of Commodification” in Martha M. Ertman, Joan C. Williams, Rethinking Commodification: Cases And Readings In Law And Culture (New York: New York University Press, 2005) at. 11. 146 Leon R Kass, “Triumph or Tragedy? The Moral Meaning of Genetic Technology” (2000) 45:1 Am. J. Juris 1 at 10. 147 L R Kass, Life, Liberty, and the Defense of Dignity: The Challenge for Bioethics (San Francisco: Encounter Books, 2002) at 3. 148 Michael J Sandel, “What Money Can’t Buy: The Moral Limits of Markets” Tanner Lectures on Human Values delivered at Brasenose College, Oxford, United Kingdom, May 1998 at 95. 62 has either a price or a dignity. Whatever has a price can be replaced by something else as its equivalent; on the other hand, whatever is above all price, and therefore admits of no equivalent, has a dignity.’’ 149 In accordance with Kantian thought, the fact that designer babies’ genetic characteristics, chararacterisics that strongly affect their personhood, will be subject to a price tag, condemns these babies to commodification. The Kantian philosophy of dignity protects only humans from commodification since only they can be wrongfully turned into consumer goods, as humans alone possess the sufficient rational and moral capacity that can be negatively impacted by violations of their dignity.150
The practice of designing babies takes commodification to an extreme by raising
greater concerns about the elements that are being objectified and the intense manner
in which they come to be market commodities. Unlike the commodification of human
organs, persons themselves become a highly customisable consumer good.
Customisable human beings differ from inanimate market commodities such as organs,
as the former have intellect and emotions that are in service of power relations that
brought them to life as a commodified person. The degree of connection of the
commodified element to the person is the moral reason behind legal prohibition. The
violation of personhood is stronger with the practice of designer babies; whereas
organs have only close ties to personhood, human beings in themselves have full
personhood. The genetic characteristics that shape personhood and identity, such as
appearance, temper, and social behavior, all become a part of the “genetic supermarket,”
which serves the purpose of maximizing consumer satisfaction. The radical alteration of
babies adds a distinct dimension of consumer experience to the process of child-making.
149 I Kant, Foundations of the metaphysics of morals, (Indianapolis:Bobbs-Merill, 1959) at 72. 150 Nick Smith, “Commodification in Law: Ideologies, Intractabilities, and Hyperboles” (2009) 42:1 Continental Philosphy Rev 599 at 608. 63
IV) Evaluation of Designer Babies’ Worth According to
Consumer Needs and Demand
An object is not fully commodified until market forces assign to it its monetary worth.
This worth reflects the degree to which it serves consumers’ needs and desires. In the process of commodification, all goods are reduced to a monetary common denominator, which allows them to be measured and substituted in the marketplace. Monetary value will be used to assess the market worth of designer babies. This market worth will accord with the appeal of genetic alterations to popular tastes.
The need to evaluate the monetary worth of custom-made designed babies by placing a price tag on their genetic characteristics will set the initial tone in parent-child relations as a dissonant economical calculation rather than a harmonious and unconditional acceptance. As the designing parents will have to pay for this non-medical product of enhancement, they will first have to inspect their altered children through the financial lenses of the worth of the selected genome to them. For instance, the designing parents will need to assess the subjective worth of interventions that might cost tens of thousands of dollars, such as selecting for a baby with a fairer skin instead of darker, or a baby that will grow to be a girl taller than the norm by several inches. The result of this estimation procedure is that these children will have price tags attached to their traits and behaviors, both of which will be calculations by dollar value.
The market will not only estimate the worth of the individual’s mind and body, but will also assign monetary prices to the essential behaviors and characteristics in the genome that are common to all humans. For the first time in history, core human characteristics 64 and behaviors, such as skin color, sexual orientation, and outgoingness will be labeled with market prices that can be determined in dollars. The market price will reflect popular opinions about the extent the average genetic designers are willing to pay to produce children according to the blueprint they have in mind. After a market for human traits emerges, genetic testing can be used to determine the monetary value of the genes of every person on the planet, including the value of non-designed people. People will awaken to a bleak reality in which a monetary price tag will capture their worth according to societal norms, biases, and opinions.
For instance, people with low stature genes might know that their genes are priced low on the market; the low value might further diminish their sense of worth. Treating the identity-related traits that constitute our very selves as a product reducible to monetary value, amounts to the gradual trivialisation of the essential characteristics that compose human nature itself.151 The attempts of the genetic market to assess the monetary worth of the enhanced genome will ultimately result in a general diminishment of the inherent and incommensurable sense of human self-worth.
The market method of reducing persons to their genes and then to a common monetary denominator further treats them as mere objects.152 A common monetary denominator reduces all goods so they can be measured and substituted on the market in a manner that extinguishes the unique essence of their properties.153 Parental bonds that naturally commence at fascination about the miracle of life will be turned into a mechanic consumer experience that will assess the soundness of the bargain made after intense financial calculations. Such cold calculations lead to the worth valuation of both children and parents, both of whom are irreducible to market logic. Commodification
151 Giorgio Resta, “The New Frontiers of Personality Rights and the Problem of Commodification: European and Comparative Perspectives” (2011) 26:33 Tulane European and Civil Law Forum 33 at 41. 152 Supra note 20 at 12. 153 Ibid. 65 transforms the inherent and incommensurable worth of the family into a post- commodification object with mere instrumental value.154
Article 14 of the Biomedical convention asserts that perceiving human beings as consumer goods with monetary worth derived from genomic qualities violates the
Kantian notion of dignity, which asserts that persons possess inherent and incommensurable self-worth, and are treasured beyond any price. 155
The evaluation of commodified newborns may very well follow the pattern of market evolution in order to keep up with the growing demand for new and improved products.
These evolutionary-like market forces that work to satisfy changing trends can potentially lead to a slippery slope of ever- intensifying demand for better babies. Kass, for instance, claims that genetic screening for a perfected baby may “be shifting parental and societal attitudes toward prospective children: from simple acceptance to judgment and control, from seeing a child as an unconditionally welcome gift to seeing him as a conditionally acceptable product … [Such attitudes] might feed the desire for better – and still better – children.”156 As technology improves, the children that are produced to be the smartest, most athletic, and most musical will become outclassed by younger children designed with more advanced genetic technology. The older cohort of designer babies will grow to be seen in their own eyes, as well as the eyes of their genetic designers, as obsolete, just as any other outdated technology.157 With a cohort of designer children becoming obsolete, they will come to feel a diminished sense of attributed dignity that has, in the process of commodification, set aside Kantian inherent dignity.
154 Ibid. 155 Ludger Honnefelder, “Bioethics and Human Genetics: Consensus Formation in Europe”(2001) 3:1 Ethics and Politics 1 at 6. 156 Leon Kass in The President’s Council On Bioethics, Beyond Therapy: Biotechnology And The Pursuit Of Perfection, (The President's Council on Bioethics, 2003) at 33. 157 B McKibben, Enough: Staying Human in an Engineered Age (New York: Times Books 2003) at 36. 66
V) Instrumentalization of the Designed Children
The ultimate purpose of commodification is the turning of a product into something that usefully serves the needs and desires of consumers. The desire to design an enhanced, highly perfected baby does not arise from a medical necessity; it arises from an intentional request of the designing parents to reach a higher level of consummation.
Habermas claims that parents would not invest in genetically engineered children unless they really believed that the enhancement they sought would significantly direct the future newborns toward a desired outcome.158 Such intentional enhancements reflect a desire on the part of parents to manufacture children to a higher level of satisfaction.
Genetic interventions can ensure a high level of satisfaction due to their great ability to select and alter the newborn to a vast array of particular tastes. For instance, parents who value discipline will be able to select children with an increased tendency toward obedience. Parents who admire music could choose a path of genetic interventions to achieve their goal of a highly musical child. In 2003, a lesbian deaf couple made use of a sperm donation to select for a deaf child. The couple has said that they will be better able to communicate with their child if he or she is incapable of hearing. The couple wished their child to be a part of the same deaf culture and identity as their own.159 Such attempts to design children to fulfill the desires of their makers turn the idyllic model for parenthood on its head. Josephine Quintavalle claims that commodification and genetic customization of children deviates from the ideal model of unconditional parental acceptance into an unhealthy focus on self-gratification. 160
The attempt to design children as if they were customizable products is akin to treating
158 J Habermas, The Future of Human Nature (Cambridge, UK: Polity Press, 2003) at 56. 159 Merle Spriggs, “Lesbian Couple Create a Child Who is Deaf Like Them” (2002) 28: 283 J Med Ethics at 280 283. 160 Josephine Quintavalle, Better by Accident than Design” in D Wasserman et al., Quality of Life and Human Difference:genetic testing, healthcare and disability, (Cambridge University Press) at 71. 67 them as a means to an end, which inevitably violates their dignity.161 Michael Sandel explains that the prospect of designing children adversely affects parents’ ability to
“appreciate children as gifts [and] to accept them as they come, not as objects of our design or products of our will or instruments of our ambition”.162 Treating human beings and the genetic characteristics that constitute their personhood as fungible consumer goods tends to induce the thought in designed people that they are merely serving as means to an end. Radin argues that “conceiving of the person as a commodity is harmful, in other words, because it undermines the conception of personhood involving the
Kantian agent as end-in-itself: the Kantian person cannot be conceived of as a fungible exchangeable object.”163 Attempts to predetermine genetic characteristics to satisfy the desires of parents are clearly a form of human instrumentalization, which violates the Kantian imperative of not treating persons as means to an end.164 The
Biomedicine Convention’s Kantian anti-instrumentalization principle directly applies to genetic manipulation, which turns individuals from persons into living commodities.165
The practice of designing babies will take human commodification to its extremes.
Designer babies will be instrumentalized straight from the moment of their inception at the laboratory, and will perpetually exist in a state of instrumentalization thereafter. The instrumentalization of these babies will become more serious as a larger cluster of traits will be selected for and altered in order to achieve the desired outcome. Enhanced children will bear in their genes the decisive evidence that they were designed as instruments for others. The commodification of children is much more serious than
161 Justo Anzar, "Designer babies A question of ethics”(2009) 59:6 Medicina e Morale 1099 at 1102. 162 M J Sandel, The Case Against Perfection: Ethics in the Age of Genetic Engineering (New York: Harvard University Press, 2009) at 45. 163 Margaret Jane Radin, Contested Commodities: The Trouble with Trade in Sex, Children, Body Parts, and Other Things (Cambridge, MA: Harvard University Press, 1996) at 84. 164 Supra note 32 at 1104. 165 J Burley. The Genetic Revolution and Human Rights (New-York:Oxford University Press, 1999) at 67. 68 most other forms of commodification as it creates and preserves a unique asymmetrical power structure in favour of the genetic designers over the designer children.
Robert J.Boyle and Julian Savulescu remind us that even though instrumentalization is condemned, in reality, many children are brought to the world to serve a purpose, such as caring for the elders, providing companionship for their sibling, or running and working in family businesses.166 However, one of the problems in Boyle’s and Savulescu’s argument is the naturalistic fallacy, also known as the is-ought problem. The is-ought problem was developed by the Scottish philosopher David Hume to point to a logical fallacy in the arguments that claim what should be morally prescribed based on a situation that already exists..
Regarding Boyle and Savulescu's argument, the existence of different instances of child instrumentalisation practices does not justify a continuation of a morally problematic behavior. At most, what exploitation and instrumentalization can achieve is the normalization of such behavior in society; such behavior, however, can in no way morally justify the treatment of children as means to an end.
VI) Denial of Self-Determination from Designed People
To treat a human being as an instrumental commodity to suit the needs of others is to dominate his/her potential life course. Genetic design predetermines the human ability to self-actualize, leading persons on a life path that was set for them, but was not chosen by them. The ability to design a human’s genome, and to shape their identity-related traits, capabilities, and gifts, has a formidable power over that person’s life path. The ability of designing parents to influence their children by the manner in which they
166 Robert J Boyle & Julian Savulescu, “Ethics of using PGD to Select a Stem Cell Donor for an Existing Person” (2001) 323:1240 British Medical Journal 1240 at 1241. 69 educate them, the values they transmit to them, and the lifestyle choices they make for them, will become even greater as parents have increasing control over the shaping of their children’s genes. Genetic enhancements have the capacity to select or to alter a cluster of genetic traits such that the level of control over children’s behaviors and particular achievements is increased. An attempt to design a prodigious musical child, for example, will cluster an array of genes such as musical inclination, meticulousness, high level precision, and discipline.
Means of socialization can be employed on top of genetic interventions as an additional layer of control over the designed child’s life. Instilling musical culture and providing rigorous piano training can be done in conjunction with genetic enhancement for increased musical capacity in order to achieve the desired goal of growing a prodigiously musical child. Genetic interventions are significantly more potent in shaping one’s life course than socialization alone, however. Several qualities sought after, such as intelligence, owe to a great deal to a particular genetic makeup. Without the proper genes, simply sending a child to the best possible schooling will not guarantee genius. Giving a child a part of Mozart’s genome is clearly not the equivalent of sending him/her to piano lessons. In the case of piano lessons, a child may choose not to devote himself/herself to the endeavor and quit his/her lessons early on.167 A child will not be able to reject an irreversible genetic intervention that predetermines their genetic profile, however.
Children designed to have an especially keen musical mind, musical taste, and musical capabilities, can do nothing to escape the genetic profile they have been instated with.
Furthermore, the predetermined genetic profile will seamlessly integrate into the child’s self-perception as an inseparable, indistinguishable part of their nature. A designed child is far less likely to resist subjection to an invisible form of control that is part and
167 J Habermas, The Future of Human Nature (Cambridge, UK: Polity Press, 2003) at 57. 70 parcel of the designed nature they were born into. Genetically designed persons might be also feel more pressured to live up to the immense expectations of their designers. In short, cutting-edge biotechnologies offer genetic designers an asymmetric and highly potent power over the characteristics and life path of a designed person.
Habermas claims that genetic alterations place restrictions upon a child’s free development of personal identity insofar as they tie the child down to the intentions of external third parties. The genetic bondage of the designed child distorts his/her relations to mental and bodily existence and to the notion that he/she is the sole and undivided author of his/her own life.168 Genetic designers will undertake one-sided decisions that will shape future lives in a manner which conflicts with self-determination.
Designed persons will be the most affected by genetic interventions, yet paradoxically, their voices will not be heard.
Allen Buchanan contends that designer babies will not be able to provide their assent to such genetic interventions “since consent cannot be obtained from future offspring who might be affected, nor from the embryos upon whom the intervention would be performed.”169 Bailey, however, argues that children will consent to their genetic modification since such changes will likely benefit them. Yet Bailey’s arguments look at only a part of the spectrum of design, without considering how genetic modification can lead to the reduction of a child’s capacity for self-governance and autonomy.170 For instance, Gregory Stock suggests that religiously inclined parents might want their children to be more devout, and thus put them on a track to be far more receptive to
168 Ibid. 169 Allen Buchanan, et al. From Chance to Choice: Genetics and Justice, 1st ed (Cambridge: Cambridge University Press, 2000) at 194. 170 Ronald Bailey, Random Genes vs. Designer Kids, online: Reason.com
Cancer Institute has claimed that soon, designing parents will be able to “tweak the emotional makeup” of their children. This ability might well be abused in such a way so as to make a child more dependent upon his/her parents. The expectation that genetic designers (i.e. parents) will act in a selfless way toward their children cannot be automatically assumed. What a genetic designer might think is the best for a child might not necessarily be so. Genetic interventions are unique in the sense that they give parents an unparalleled degree of control over the identity of their children and the way they might be prone to behave. This novel degree of parental control over their children might also raise the expectations the parents have for their genetically designed children to unprecedented levels.
Nicolas Bostrom argues that although the Transhumanist system of values recognizes the negative outcomes of commodification, these outcomes ought to be compared with the potentially enormous benefits accrued from genetic enhancement. Hence, genetic enhancement should be permitted despite its negative consequences.172 The consequentialist position regarding the commodification of newborns is not without merit. A Kantian deontological definition of dignity, however, undoubtedly conflicts with a consequentialist calculus which weighs the benefits and harms to human dignity. The consequentialist position is incompatible with a deontological approach that underlies the
Biomedicine Convention; these two normative theories speak different ethical languages.
According to the deontological ethical perspective, it is wrong to choose traits of offspring, no matter how well-intentioned. The deontologist Leon Kass claims that the
171 G Stock, Redesigning Humans: Our Inevitable Genetic Future, (New York: Houghton Mifflin, 2002) at120. 172 Nick Bostrom, “Dignity and Enhancement” in The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office,2008) at 180. 72 process of genetic selection of life profoundly dehumanizes the enhanced newborn, no matter the degree of benefit of the enhancement in the resultant child. 173
VII) Conclusion
Prenatal genetic enhancements that produce custom-designed babies raise serious concerns about the potential to reduce vulnerable human subjects into wholly commodified objects. The
Biomedicine Convention’s core principles and respective articles oppose genetic interventions for non-therapeutic purposes. These interventions would commodify newborn ‘designer babies.’ The commodification process assigns a monetary value to enhanced genetic traits according to market logic. Assigning a monetary value to human beings in accordance with their genetic characteristics – as though these human beings were mere products – diminishes their inherent, incommensurable sense of dignity. The alteration of genetic profiles, according to the view and desires of designing parents, treats persons as mere means to an end. A child’s customized genetic profile, along with its identity-related traits, can profoundly influence a child, to a point where self-governance is denied. Kantian-based philosophy of dignity provides a legal framework that assures persons the right not to be treated as objectified commodities that serve as means to the ends of others, but as liberated, fully dignified human beings.
173 LR Kass, Life, Liberty, and the Defense of Dignity: The Challenge for Bioethics (San Francisco: Encounter Books, 2002) at 3. 73
Chapter Two
Objections to the Use of Germline Genetic
Engineering for Eugenic Practices
I) Introduction
The renowned Greek philosopher Plato advocated for controlling human reproductive hereditary qualities by proliferating the “suitable” traits and simultaneously eliminating the
“unsuitable” traits as ways of achieving social progress.174 Such methods, which can be classified as
‘eugenics,’ aim at more than designing an individual’s characteristics; they aim at designing society and its members to fit certain standards of “fitness.” The ideas of eugenics were implemented in the early 20th century throughout the developed nations by a series of enactments that attempted to improve common genetic pools. Public discontent with, marriage restrictions, compulsory sterilization, and Nazi atrocities have eventually led to the demise of the movement. Recently, a neo-eugenics movement has appeared, seeking to achieve the goals of its predecessor, perfecting the genetic pools of society by encouraging germ-line genetic modification.
However, modifying the germ-line is strictly prohibited by Article 13 of the Biomedicine
Convention due to concerns of eugenic practices that violate human dignity. Article 13’s rationale posits that dignity is threatened by attempts to use genetic engineering to precondition future members of society to eugenic views on “good” and “bad” characteristics, behaviors, and identities, and thus using them as mere instruments to dictate views on the faultless society.
174 Plato, The Republic, Book I (New York: Basic Books, 1991) at 84. 74
II)The Counter-Eugenic Rationale of the Legal Prohibition on Germline Modification
Germ-line genetic engineering is a potent technology that will enable human society in the foreseeable future to take increasing levels of control over the fundamental particles that shape the human genome. This societal ability to reshape the human genome in a manner that is inheritable to future generations offers the power to direct the composition and the quality of future societies. This power to shape future members of society has been both supported by the neo-eugenic movements that see it as a way to achieve individual and social progress, and also severely criticized by governments, public interests groups, and ethicists, as a means of domination over newborns.
Article 13 in the Biomedicine Convention prohibits any form of genetic engineering of the inheritable materials in the reproductive cells, (i.e. in the germ-line) due to eugenic concerns.175 The condemned eugenic practices aim at improving the overall quality of genetic pools by removing “unsuitable” genes and proliferating “suitable” ones.176
Section 89 in the Explanatory Report regarding Article 13 explicitly expresses such concerns from intentional modification to “produce individuals or entire groups endowed with particular characteristics and required qualities.”177 Article 13 and its clarification as articulated in the Explanatory Report unmistakably evoke the fear of exploitation of germ-line modification of eugenic practices.178 With respect to Article 13, the legal scholar Andorno argues that “germ-line interventions, given their irreversible effects on future generations and their possible misuse for eugenic purposes, pose
175 The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Article 13. 176 Roberto Andorno, “Biomedicine and International Human Rights Law: in Search of a Global Consensus”(2002) 80:12 Bulletin of the World Health Organization 959 at 961. 177 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 83. 178 Gilbert Hottois, “A Philosophical and Critical Analysis of the European Convention of Bioethics” (2000) 25:2 Journal of Medicine and Philosophy at 141. 75 unprecedented concerns."179 Article 13 particularly condemns using germ-line manipulations for eugenic purposes on the grounds that newborns should be brought to the world free of biological preconditioning and of “good” and “bad” behaviors according to social presumptions and prejudices.180 Eugenicists can achieve such biological preconditioning of preferable behaviors and traits by exploiting the potent technology of germ-line modification. The ban on germ-line genetic enhancement in
Article 13 of the Biomedicine Convention stems from the value of human dignity as enshrined in human rights law.181 The notion of human rights that underlies Article 13’s prohibition is based both on Kantian deontology and Kantian dignity.182
It is worth noting here that aside from the Biomedicine Convention, both the Universal
Declaration and the Charter of Fundamental Rights of the European Union also ban eugenic practices on grounds that they severely threaten human dignity. 183, the Charter of
Fundamental Rights of the European Union takes a unique approach againsit eugenics in not prohibiting germ-line modification or other methods of controlling hereditary traits but generally condemns and bars all practices that directly intend to produce eugenic effects over society.184 This robust united stand against eugenics on the part of the three main
European human rights law instruments demonstrates that European perspective based human rights law is legally determined to prevent a historical reincarnation of attempts to control population genetics.
179 Roberto Andorno, "The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law" (2005) 2 Journal of International Biotechnology Law at 140. 180 Supra n.3 at 961. 181 Martin Gunderson, “How the Use of Human Rights Treaties to Prohibit Genetic Engineering Weakens Human Rights” (2008) 18:1 Journal of Evolution and Technology 86 at 86. 182 Supra note 8 at 27. 183 J E J Rasko, G O'Sullivan & R A. Ankeny, The Ethics of Inheritable Genetic Modification: A Dividing Line? (Cambridge UK: Cambridge University Press, 2006) at 266. 184 Norberto Nuno Gomes de Andrade “Human Genetic Manipulation and the Right to Identity: The Contractions of Human Rights Law in Regulating the Human Genome” (2010) 7:3 Scripted, 433 76
III) The Aims of the Eugenic Movement
Eugenics can be understood as a movement that seeks to achieve social progress through the proliferation of ‘suitable’ human genetic traits and the simultaneous elimination of ‘unsuitable’ traits from genetic pools of society. The term ‘Eugenics’ (from the Greek words ‘Eu,’ meaning ‘good,’ and ‘genos’ meaning ‘birth’) was coined in 1883 by the prolific British scientist Sir Francis Galton, a cousin of Sir Charles Darwin.185
Galton sought to apply Darwin’s theories to human society and initiated eugenics as a science to study how to apply selective pressure to human populations to yield improved hereditary qualities. Galton’s eugenics sought to give biological advantage to those
“ablest races” by enhancing their appearance, health, intelligence, and moral behavior.
Galton adhered to social and financial incentives that encouraged the birth of “fit” persons, and the eradication of “unfit” persons with defective genes.186
The aim of eugenics came into realization in the early 20th century when developed nations began to enact laws establishing governmental education and the promotion of
“better” mating, licensed marriages based on genetic “suitability,” coercive sterilizations, and, in Nazi Germany, mass euthanasia and genocide.187 Historic Eugenic practices demonstrate how nations, including western constitutional democracies, treated people as a means to serve a “greater good” and to create a “faultless society,” even by severely derogating from bodily integrity, equality, and dignity, the most basic human rights in reformed societies. However, since the 40’s eugenics legislation and practices have fallen from grace, and between the 60’s and the 70’s the movement has gone utterly
185 F Galton, Inquiries Into Human Faculty And Its Development, 2d. ed. (London: Everyman’s Library: Science 1943) at 44. 186 Ibid 187 D J Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (Berkeley: University of California Press, 1985) at 117. 77 underground due to strong public discontentment.188
In recent decades, the eugenics movement has clearly reemerged in public discourse with its advocacy to embrace genetic interventions on individuals for the purpose of redeeming society from its flaws and enhancing its strengths. This new incarnation of the eugenics movement has also attempted to draw some conclusions about the perceived failure of its predecessor movement by shifting the stress of its core assumptions from state controlled eugenics programs to individually-controlled eugenics practices.189 This shift in focus to individually directed eugenics has led the movement to embrace a fresh moniker, namely, “liberal eugenics.” We shall in section VI of this chapter why applying the term “liberal eugenics” to germ-line genetic modification in embryo is largely a misnomer.
The goals of the neo-eugenics movement have remained akin to its historic counterpart
– to lead populations toward a better quality of common genetic pools.Allen Buchanan,
Dan W. Brock, Norman Daniels, and Daniel Wikler attempt to reinvigorate the cause of eugenics by illustrating an ethically permissible formula for neo-eugenics that is based, among other recommendations, upon liberal eugenics that allow for individual choices without state intervention.190 One of the authors, Daniel Wikler, claims that
“reprehensible as much of the eugenics program was, there is something unobjectionable and perhaps even morally required in the part of its motivation that sought to endow future generations with genes that might enable their lives to go better. We need not abandon this motivation if we can pursue it justly.”191 As we can see from this passionate
188 Anne-Emanulle Birn and Natalia Molina, “In the Name of Public Health” (2005) 95:7, American Public Health J 1095 at 1096. 189 Nicholas Agar, "Liberal Eugenics", (1998) 12:2 Public Affairs Quarterly 137 at 137. 190 Allen Buchanan, et al. From Chance to Choice: Genetics and Justice, 1st ed (Cambridge: Cambridge University Press, 2000) at 60. 191 Ibid. 78 defense of societal enhancement, the motivation to pursue eugenics is still very much alive and well.
IV) Eugenics as a Population Level Endeavour
One the most significant differences between individual parents that opt for designer babies and eugenics is that the latter promotes improvement of a newborn’s genetic traits not only for individual interests, but also for the promotion of collective interests. Under eugenics, the genetic qualities of a newborn are not only an instrument to fulfill the desires of the parents but also for those of the collective group. We can learn about this collective dimension of eugenics from the careful wording of the Oxford dictionary, which defines it as “the science of improving a population by controlled breeding to increase the occurrence of desirable heritable characteristics.”192
Despite the fact that eugenics is a population-level endeavour, in this individually- inclined era, modern proponents of neo-eugenics are attempting to differentiate themselves from early 20th century eugenics. Neo-eugenicists hope to establish such a differentiation by claiming that while the historical movement is dedicated to the aim of improving societal welfare via improvement of genetic pools, neo-eugenics simply advocates that multitudes of individuals should improve the genetic qualities of their children. In fact, this suggested distinction is largely imprecise. In both eugenics and neo- eugenics, the motivations for achieving the faultless genome are driven by the desires of individuals and those of societies.193
Another way to learn about the collective nature of eugenics is from the clear images drawn by the rhetoric of proponents such as Julian Savulescu, Robert J. Boyle, and
192 Oxford dictionary, 2d ed, sub verbo “Eugenics”. 193 Sonia M.Suter “A Brave New World of Designer Babies?” (2007) 22:897 Berkeley Technology LJ at 946. 79
Elizabeth Fenton. These proponents support genetic interventions to uproot crime and immoral behavior. Savulescu dubs such genetic interventions as the “moral enhancement” of people and states that society is threatened by the underutilization of genetic intervention to achieve common societal goals like the fights against crime, terror, and indecent and obscene behavior.194 Fenton explicitly argues that “moral enhancements” from genetic interventions are needed to fight the faults in the human genome for the benefit of the individual and a “morally enhanced” society in service of the greater good. 195
Yet how can proposed eugenics schemes such as “moral enhancement” come to influence parental genetic choices for designing babies? As early as the 1930’s, Fredrick
Osborne provided an answer on how to establish liberal eugenics. Osborne claimed that people will not fully accept eugenics under state-led programs, but rather that a “eugenic consciousness” will naturally emerge in populations through the passage of time once two certain social conditions are met. Firstly, the capitalistic economy must develop up to a point where consumer choice will greatly influence the markets. Secondly, the social structures must change to enable mass communication of eugenic preferences to the populations.196 These two preconditions for the development of social structures in
Osborne’s nearly-prophetic vision have been realised since the 30’s, and liberal eugenics has begun to emerge.
With regard to the societal influence of eugenics, what we may consider as purely individualist choices will clearly mirror the popular norms in regards to appearance, skills, and social behaviors. For example, parents in labour-intensive societies might turn to
194 Julian Savulescu, Unfit for Life : Genetically Enhance Humanity or Face Extinction, online: Oxford Uehiro Centre for Practical Ethics
In addition to the influence of social norms, another major influence over “consumer” choices in the designing of children is marketing. In marketing, the media does not simply inform the public, but makes clever use of effective messages to manufacture mass consumer tastes and amplify the need to purchase goods. We can easily imagine that advertisements for the designing of newborns will shape the tastes of consumer parents, and, along with socialization eugenics, will create the phenomena of market eugenics. We can even envision commercials advertising genes for purchase in the
‘genetic supermarket’. For instance, in advertisement that targets more traditional societies that place high value on discipline and obedience, the advertisement could depict a brattish child that makes his/her parents miserable and does not put much effort in school, and another genetically modified child that is comfortable, respects authority, and is content with conformity. The commercial could then depict the parents, who prefer disciplined behavior, running happy in the fields with their comfortable, obedient, genetically engineered child. This potentially multi-billion dollar industry would potentially take full advantage of its media power to forge collective consumer preferences for how to design children. With the force of market influence, socially propelled liberal eugenics will be able to co-ordinate eugenic schemes without 81 governmental coercion. What appears to be parents designing their children to their liking would in reality be powerful industrial and societal institutions heavily shaping
“consumer” choices on how to design future members of society to suit their interests and desires.
V) Evaluation of Future Members of Society According to Eugenic Views
Under eugenic schemes, embryos will be selected according to the level of which their genome fits or conflicts with the eugenic preconceptions of which traits are “suitable” or
“unsuitable.” Firstly, genetic tests will be employed to evaluate the estimated worth of the future person and whether or not they are “suitable” according to the eugenic view of “suitability.” Secondly, whenever the estimated eugenic worth deems the future person “unsuitable,” such a person will be further treated as a means to an end, and its characteristics will be genetically engineered to fit the eugenic mold of a “suitable” future member of society. These attempts to evaluate and selectively instrumentalize people according to their “genetic worth” negates the Kantian notion of dignity, in which all people have inherent incommensurable worth.
The theory and practice of eugenics normalizes the idea that some people and some groups are less worthy than others, and that there might be a social hierarchy of genetic traits and values. For instance, a gifted level of intelligence might be preferable to a normal range level or less, just as a taller stature might be preferable to a shorter stature.
Not only might certain subjective perceptions of self-worth be hurt, but also the perceptions of entire groups that share less “suitable” genes. The message theory holds that eugenic practices send a message to certain groups so that their membership in 82 society might be less worthy and less welcomed.197 The removal of genes associated with disfavored minorities would also reinforce and even strengthen the unjust prejudice against them.198
The attributed dignity approach with a ‘Transhumanist’ value set will argue contrary to the Kantian ‘inherent view’ approach to worth, that human genetic enhancement can help to bolster dignity. For instance, Bostrom fiercely attempts to argue that genetic enhancement will not diminish dignity, but, by creating more excellence in society, enhanced persons will be more dignified by other members of society. 199 The concept of excellence is a social construct, however, and the conventions that define excellence are constantly in flux.200 For example, past record-breaking athletic performances will not stand with present records of athletic achievement, just as excellent technology will eventually be obsolete. The practice of eugenics will perpetually heighten the standards of excellence. Persons who are not ‘up-to-date’ will simply not enjoy a great deal of attributed dignity. Those who lag behind, (e.g. someone with a slight cognitive performance below the normal range of a highly enhance person), might not enjoy even a basic amount of attributed dignity by his/her peers. The conceptual move from inherent dignity to attributed dignity can offer moral support to a system of neo-social
Darwinism, where there is a competition between the fittest, and most dignified. Those who choose not to keep up-to-date with the latest enhancement might find their attributed dignity dwindling.
197 Andy Miah. “Genetic Selection for Human Enhancement” (2007) 4:6 Journal of International Biotechnology Law 1 at 21. 198 Margaret Olivia Little, ‘Cosmetic Surgery, Suspect Norms, and the Ethics of Complicity,’ in Erik Parens (ed.), Enhancing Human Traits: Ethical and Social Implications, (Washington, D.C.: Georgetown University Press, 1998) at 164. 199 Nick Bostrom, "Dignity and Enhancement" at The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office 2008) at 180. 200 Elizabeth F Cooke, “Germ-line Engineering, Freedom, and Future Generations” (2003) 17:1 Bioethics 32 at 34.
83
VI) Instrumentalisation of Future Members of Society for Eugenic Purposes
The eugenic vision for a better society requires that numerous individuals over generations improve their genome and remove genes that are considered “unsuitable” and/or abnormal traits such as unacceptable, immoral, criminal behavior and disfavored physical properties. Eugenic schemes strive to create a society that will be the apex of achievement by treating the individual as a means to their end, using an enhanced genome as the main building block for ‘a great society.’ Such eugenic reasoning regards the individual not as an end, but as a means to serve a higher cause of common good, that of perfecting the genetic pools.201
Neo-eugenic practices will transform the perception and treatment of a newborn from a subject into an object such that its identity will be the brainchild of a social vision where selfhood is sacrificed at the altar of social performance.202 Eugenic programs as such violate the Kantian definition of dignity that prohibits the treatment of people as pure instruments for the use of others. More substantially, the Kantian categorical imperative opposes eugenic control over children’s lives. The Kantian categorical imperative attempts to detect if there is a moral duty to behave in a particular way by asking the question” “What if everybody were to behave in that matter?”203 According to the categorical imperative, if all parents and/or societal institutions were to impose upon children a form of genetics that would constitute traits and behaviors meant to serve societal interests, future generations are likely to grow more docile and subservient to a preexisting oppressive cultural hegemony.
201 Ludger Honnefelder, “Bioethics and Human Genetics: Consensus Formation in Europe”(2001) 3:1Ethics & Politics, 8. 202 Supra n.3 at 961. 203 I Kant. Foundations of the metaphysics of morals. (Charlottesville, Michie Company, 1959) at. 84
Under neo-eugenics’ genetic conditioning for “good” and “bad” traits, society will not need to tolerate the individual if it can use genetic means to shape it according to its conventions. For example, Julian Savulescu from Oxford, Robert Boyle From Imperial
College London, and Elizabeth Fenton from Harvard call for eugenic schemes of “moral enhancement” to remove genes that correlate with criminality, terrorism, disobedience, and anti-social behavior at large. Eugenic schemes that targeted nearly the same
“suitable” populations also existed in the early 20th century. Even though criminal activity should be condemned and punished where appropriate, such behavior does not warrant potentially subjecting future members of society into genetic manipulation that can drastically restrict free will. Such neo-eugenics are potentially hazardous as they attempt to treat, shape, and dominate future society, in a degrading and instrumentalising manner.
Furthermore, eugenic programs that seek to remove genes that correlate with criminal activities are making two rather simplistic assumptions. The first assumption is that an individual's genetic makeup can sufficiently explain causality to characteristics and behaviors (I,e genetic determinism). Genomic sciences partly negate genetic deterministic assumptions and show today that human behavior and traits and stem form complex interactions between genetic and environmental and social factors204. Furthermore, the neo-eugenic brand of genetic determinism overemphasizes intervening on genetic pools while it largely understates the importance of intervention on the social determinants of crime and deviant behavior. Second, the neo-eugenic camp that advocates for "moral enhancement" simplistically presupposes that the concurrent criminal law is always just.
If such eugenics were to be implemented in the past, Socrates would not have defended democracy, Oscar Wilde could not have been gay, Rosa Parks could not have stood
204M Ridley, Nature via Nurture: Genes, experience and what makes us human,(New-York: HarperCollins Publishers, 201)1 at 5. 85 against segregation, and Nelson Mandela against Apartheid.205 The possibility of genetically conditioning future members of society for preconceptions of “good” and
“bad” is a profound act of social domination.
VII) Denial of Self-Determination from Future Members of Society
The neo-eugenic movement often presents itself under the moniker of liberal eugenics, as a movement that promotes eugenic choices that are taken freely by the individual. The decision to use genetic enhancements for eugenic purposes on future newborns possesses unique and unprecedented power to shape their lives. Eugenic genetic design denies newborns of the most important choices in life about who they are, and who they will grow to be. What will the significant characteristics of their identity be? Liberal eugenics completely denies future members of society self-determination in some of the most fundamental aspects of their lives. Jürgen Habermas argues that this novel power that is enfolded in genetic interventions can be used to dominate the lives of future members of society. According to Habermas, a person may resist socialization and indoctrination. She might reject the norms that she was brought up with, but she cannot change her genetic design and the social conditioning they help to facilitate.206 Habermas argues that the consent of newborns cannot be assumed for genetic enhancement.207
Biotechnological power might determines one’s life plans and profoundly undermine the child’s understanding of herself as a free person, as the author of her own life, and replace that understanding with other authors, such as her parents and/or societal influence.
205 Polyester Thought, The Bermuda Triangle of the Pot Calling the Kettle Black, online:
Supporters of eugenics argue that paternalism regarding genetic intervention can be justly exercised given that children lack the faculty that requires both knowledge and reasoning to make such complex life story molding choices.208 Such an argument generates intellectual tension and incoherence between the paternalism that exploits the vulnerable position of future newborns, and the core premises of liberalism for full autonomy. If liberal eugenics wishes to be coherent and loyal to its premises, it should have advocated only for somatic (i.e., non-inheritable, post-natal) genetic enhancement in persons with consensual capacity, and not impose life plans and identity dominating decisions upon future members of society. Still, liberal eugenics advocates on behalf of parents and powerful societal and economical institutions to force their interests at the expense of the rights of future persons to be free of genetic conditioning. A truly coherent liberal position would fully respect the rights of those who will be directly influenced by the novel power to alter lives through genetic design.
VIII) Summary
The reemergence of the eugenic movement has reignited the debate about the permissibility of eugenic practices. Although proponents of the neo-eugenic movement try to depict a movement that is liberal and promotes individual choices, in regards to germ-line genetic modification, neither those who are mainly influenced, i.e., the newborns, nor their offspring, are capable of self-determination in regards to the essential genetic characteristics that greatly constitute their identity. Eugenic practices will attempt to reshape future members of society in a manner that attempts to socially precondition them to preexisting norms and biases about “good” and “bad” identity traits. Achieving the eugenic aim of improving society as a whole will demand that future
208 Dov Fox, “The Illiberality of Liberal Eugenics”, (2007) 20:1 Ratio 1 at 9. 87 members of society will be genetically designed to eliminate “unsuitable” traits and proliferate “suitable” traits, according to the dominant eugenic view, in a manner that will treat persons merely as means to an end. The concern about instrumentalizing future members of society to eugenic aims underlies the prohibition on germline modification, a prohibition that seeks to uphold the human right to dignity.
88
Chapter Three
Preserving the Genetic Integrity of the Human Species
I) Introduction
The genesis of the genetic sciences can be largely traced to Charles Darwin’s seminal work The Origin of The Species that illustrates the hereditary mechanisms that cause species to adapt in response to changing environments, evolve, and eventually diverge into new species. Such a broad, species-focused viewpoint directly serves as a basis for
Biomedicine’s convention prohibition on germline modification. The prohibition in
Article 13 is based on the rationale that the advent of inheritable genetic modification poses irreversible transformative risks to human kind as a whole. The human species is also protected by two additional legal constructions that the Council of Europe has devised: the human right to non-modified genetic heritage and the common heritage property doctrine that asserts that the human genome is a shared resource and source of collective identity for all species members.209 The collective human identity of the species at the heart of the doctrines is threatened by potential radical transformations of the genome, such as chimeric human-animal beings, and a biological divergence from the human species. Attempts to tinker with the human genome for the purpose of species perfection will forcefully instrumentalize future generations. Moreover, the preceding generations’ domination and instrumentalization via permanent inheritable genetic modification will not only affect the genome of only one subsequent generation, but will also forcefully bind all future generations to come.
209 Subsections III and IV in this chapter will discuss in further details the Council of Europe's two legal constructions. 89
II) Species Integrity Based Rationale
The Biomedicine Convention uniquely seeks to protect, under an enactment, the interest of perhaps the broadest group in the history of legal thought, the human species itself. The concern for the species can be clearly seen in the Explanatory Report that states: “Whilst developments in this field may lead to great benefit for humanity, misuse of these developments may endanger not only the individual but the species itself.”210
Similarly, the preamble directly references the species, stating that “the risks associated with this growing area of expertise (i.e. genetics) should not be ignored.” It is no longer the individual or society that may be at risk but the human species itself. These wide- ranging legal safeguards are derived from the Biomedicine Convention’s rationale that tinkering with human genetics has far reaching transformative effects well beyond the individual, to the human species as such.211 The human species is threatened by manipulations that will irreversibly transgress the biological borders that enclose all humans into a cohesive group that shares a singular human identity.
The view that underlies the Biomedicine Convention is that the human genome serves as an integral part of both collective and individual components of identity.212 The
Explanatory Report states that: “[The] Convention sets up safeguards, starting with the preamble where reference is made to the benefits to future generations and to all humanity, while provision is made throughout the text for the necessary legal guarantees to protect the identity of the human being.”213 This excerpt from the Explanatory Report
210 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 89. 211 Gilbert Hottois, “A Philosophical and Critical Analysis of the European Convention of Bioethics “ (2000) 25:2 Journal of Medicine and Philosophy at 141. 212 T Murphy, New Technologies and Human Rights, (Oxford: Oxford university press, 2009) at 246. 213 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 15. 90 directly references the right of future generations to preserve their human identity. The identity that is protected within the human genome is not only that of individuals, but also of their future descendants; their identities are protected over time within the bounds of the human species.214 Human genetic modification and/or enhancement threaten to gradually blur the strong indications of identity that are both unique to us, and, at the same time, are generally shared with a group we belong to.
The prohibition on human germline genetic modification is supported by two interrelated legal constructions, the right to inherit non-modified heritage and a subsequent common heritage property doctrine. 215
III) The Human Right to Non-Modified Heritage
In 1982, the Council of Europe adopted the recommendation of its Parliamentary
Assembly and proclaimed a novel human right, “the right to a non-modified genetic heritage.”216217 This Council of Europe’s decision to establish a new right is also central to its main legal instrument, the Biomedicine convention. This newly enshrined human right to non- modified genetic heritage affirms that all humans have a universal right to inherit a genetic pattern, which was not artificially changed. This newly enshrined human right affirms that all humans have a universal right to inherit a genetic pattern which was not artificially changed. The new right for manipulation-free genomes was derived from the right to life and the right to human dignity.218 Here, dignity serves as a guarantee for future
214 Supra note.3. 215 Norberto N G de Andrade “Human Genetic Manipulation and the Right to Identity: The Contractions of Human Rights Law in Regulating the Human Genome” (2010) 7:3 Dcripted 429 at 433. 216 The Council of Europe Parliamentary Assembly, Recommendation 934 (26 January 1982) On Genetic Engineering at 12. 217 Ludger Honnefelder, “Bioethics and Human Genetics: Consensus Formation in Europe” (2001) 3:1 Ethics & Politics 1 at 9. 218 Supra note 6 at 435. 91 generations that they will be free from being forced to inherit manipulated genes. Human dignity gives rise to the right of non-modified genetic heritage, which aims at preserving the natural biodiversity and the genetic complexity of the human species that arise from the uniqueness and inviolability of human DNA.219 In regard to the concerns about species integrity and identity, human dignity is extended beyond the individual level to a broader protection of humanity. This broader notion of dignity is recognized in Kantian philosophy as the concept of the collective right of humanity and future generations to human dignity - “die Menschheit.”220 The right non-modified genetic heritage was acknowledged due to the need to protect the genome as a collective repository of human traits from interventions that will permanently alter the features and characteristics of humanity.
IV) The Common Heritage Property Doctrine
The Biomedicine Convention asserts that the human genome serves as a cordial connection between humanity that binds the entire members of the species. The genome is the shared building block of humanity and is of vital significance for future generations.221 The common heritage property doctrine embraces this view that the human genome is the shared building block of all members of humankind. The human rights law idea of collective administration of public interest was first expressed in Kant’s essay ‘Toward Perpetual Peace,’ which has influenced the international law’s common heritage doctrine.222 The application of the common heritage doctrine to the genome is justified on the grounds that since all humans inherit, express, and need the genome for
219 Stephen P Marks,” Tying Prometheus Down: The International Law of Human Genetic Manipulation”, (2002) 3:1 Chicago J international L at 117. 220 Roberto Andorno, “Dignity of the Person in the Light of International Biomedical Law” (2005) 55:1 Medicina e Morale 165 at 166. 221 Ibid. 222 Ronnie D Lipschutz, “From Stakeholders to Shareholders: Fostering Global Economic Democracy through Usufruct Rights” (upcoming paper). 92 their very being, the genome is humanity’s common heritage. Such common heritage has to be protected as a common infrastructural resource. For that purpose, both the Council of Europe and the Universal Declaration adopted the view that the human genome is an inalienable patrimony of all humankind. 223 This concept of the human genome as an inalienable patrimony of humankind signifies a commitment to protecting the genome from any attempts to possess and manipulate it. Attempts to possess or manipulate will interfere with this communal infrastructure of all humankind.
The common heritage property doctrine has been criticized due to its assertion that the human genome is a collective patrimony of humankind which creates a difficulty in administering shared genetic resources.224 The response to such criticism is that the doctrine’s rationale does not necessarily assume that administration is a primary aim in making the genome the inalienable patrimony of humanity. A primary concern of the doctrine is to protect the genome collectively because all modification to it will affect not only the individual, but also the collective. Such modifications will be irreversible and affect all future generations that share the human genome. Such radical echoing throughout all future generation cannot be approved of when the majority of the affected individuals are yet to be born. In addition, there is absolutely no ability to assume any valid consent on their behalf to undergo genetic modifications.225 Article 13’s rationale posits that the preceding generations do not have the right to permanently modify the human genome of the following generation or, indeed, of all future generations.
223 Supra note 6 at 446. 224 Pilar N Ossorio, “The Human Genome as Common Heritage: Common Sense or Legal Nonsense?” (2007) 35:3 Journal of Law, Medicine & Ethics 425 at 429. 225 Supra note.8 at 7. 93
V) Breaching Species Integrity as a Violation of Human Dignity
The human genome is a fundamental pillar of humanity and it must be protected for the purpose of preserving the integrity of the human species.226 However, there are even deeper concerns to the genetic integrity of the species behind the prohibition on future newborns’ genetic enhancement. Since the risks to the species might seem intangible at first, I will present common scenarios from the literature that will illustrate vividly how human-germline enhancement might temper with the genetic integrity of humankind.
According to the right to non-modified genetic heritage, individuals do not have the right to permanently alter the building blocks of humanity in such a way so as to change the identity and nature of future generations. There are certain potential scenarios that particularly endanger the right to non-modified genetic heritage. In order to understand the potential violations of the prohibition of germline modification and their complimentary doctrines, we must first turn to the visions for species perfection and the creation of a post-human society.
In his vision for the betterment of the human species, Bostrom suggests not only the eradication of all diseases, but the permanent enhancement of human morality that causes deceitfulness, anti-social behavior, and severe crimes. 227 Bostrom claims that the species will be better off being enhanced since it has many inherent flaws. The
Transhumanist movement, that Bostrom is a leading figure in, explicitly cites a
Nietzschean perspective for reforming, recreating, and entirely reshaping the human species on account of its weaknesses. The result of species perfection is referred to by the Transhumanists as
“post-human.” Winner argues that:” Whether we call this new creature “posthuman,
226Supra note 6 at 441. 227 Nick Bostrom, “In Defence of Post Human Dignity” (2005) 19:3 Bioethics at 205. 94 metahuman, transhuman, [or] ultrahuman,” it is either our fondest hope or our most pernicious fantasy“.228 The popular post-humanist visions of the future call for the use of germline modification for achieving immortality. This is achieved by removing the death that is programmed within ourselves, the physical limitations of our frail bodies and souls, and overcoming the weakness of the human along the path to the post-human future.229 The path to our post-human future goes through the harnessing of genetic engineering that will help us to assume intentional control over the future course of human evolution.230
Still, even if one does not think that such arguments to radically transform the species contain hubris, one might still understand that there could be unforeseen affects and great harms from reshaping the human mind, body, ageing, social interactions, and basically the identity and nature of the species. For example, ageing serves an important purpose of making way to the younger, and preventing overpopulation. There is neither a scientific nor an ethical consensus that using germline modification to intentionally redirect human evolution is a sweet dream for future generations and not a long nightmare. Treating future generations’ rights with respect warrants the adoption of the precautionary principle and the prevention of incautious attempts to redraw humankind with a potentially broken pencil
VI) Breaching Species Boundaries by Creating a Human-Animal Interspecies
Germline engineering possesses the power to radically redesign our genome, and so, it will push the boundaries of the human species into vastly unfamiliar new frontiers.
228 Harold W Baillie & Timothy K Casey eds, “Is human nature obsolete?: Genetics, Bioengineering, and the Future of the Human Condition” (Cambridge MA: MIT Press, 2005) at 385. 229 The Transhumanism Cosmic Conscious Evolution, Transtopia – what is transhumanism? Online: < http://www.euvolution.com/>. 230 G Stock, Redesigning Humans: Our Inevitable Genetic Future (New York: Houghton Mifflin, 2002) at 184. 95
One such frontier is the unprecedented possibility of infusing animal DNA into the human genome. The human-animal species barriers have been already breached in two very recent embryological experiments: the first experiment infused jellyfish green florescent genes that enable a creature to glow green in the dark and eventually into a human embryo; and the second experiment attempted to create an embryonic human-pig chimaera for medical research.231 Although the embryos were not allowed to develop into living chimeras, such radical transformative experimentations on the species vividly illustrate the coming ethical concerns. The Council of Europe wishes to protect these barriers by the establishment of the right to non-modified genetic heritage.
However, not everyone agrees about the potential impermissibility of creating human-animal transgenic or chimeric interspecies. Julian Savulescu argues that harnessing the enhancing power of animal genome will not only be beneficial to individual humans, but to humanity itself. Savulescu argues that a move towards transgenic or chimeric human-animals can, inter alia, increase our rational capacity and, as such, “it is the essential expression of our humanity.”232 According to Savulescu, most animal-originated traits can endow the species with new capabilities, new senses, and new physiology. For instance, one of his suggestions is to transfuse bat DNA into the human genome to modify the human brain’s auditory cortex and facial physiology to use sonar for better navigation in the darkness.
231 Nikicia Zaninovic, “Genetic modification of Pre Implantation Embryos and Embryonic Stem Cells (ESC) by Recombinant Lentiviral Vectors: Efficient and Stable Method for Creating Transgenic Embryos and ESC” (2007) 88:1 Fertility and Sterility at 310. 232 Julian Savulescu, “Human-Animal Transgenesis and Chimeras Might Be an Expression of Our Humanity” (2003) 3:3 The American Journal of Bioethics 22 at 22. 96
Despite the many benefits from creating human-animal interspecies, Savulescu asserts that transgenic or chimeric humans are only permissible insofar as they do not reduce or harm the most essential of human capacities, the ability to rationalize and the resultant ability for moral reasoning. Savulescu’s definition for the essential, inseparable characteristics of humanity and for protecting the human genome from impermissible interventions clearly reflects a thin definition of humanity. Kass holds a thick definition of humanity that asserts that the human genome as a whole constitutes a cherished repository. The entire human genome has to be preserved from harm as a deontological obligation that binds humanity. For Kass, even if transgenism improves certain individual capabilities, it is a dehumanizing practice that deeply hurts both the dignity of the individual and the sense of human dignity as applied to the human species as a whole.233
Substantial changes to the genome might not only breach the species barriers between human and animals, but might also establish new species barriers due to large genetic gaps between the normal, unenhanced humans, and the highly enhanced. The arguments that radical genetic manipulations can cause the human species to ultimately diverge into several different species are not being made by novelists with overactive imaginations, but by highly acclaimed scientists. Two of these scientists are James
Watson, the former head of the Human Genome Project, and the Princeton University
Geneticist Lee M. Silver.234 The two scientists assert that the human species is likely to diverge since it is impossible that all every member of the species will receive the same standard of genetic modifications, if they will be able to access any at all. Genetic enhancement will be priced beyond the reach of the vast majority of the population in developing countries. Additionally, skeptics of genetic technologies and culturally
233 Leon R Kass, “Ageless Bodies, Happy Souls: Biotechnology and the Pursuit of Perfection”(2003) 1 The New Atlantis 1 at 20. 234 L M Silver, Remaking Eden: How Genetic Engineering and Cloning Will Transform the American Family (New York, HarperCollins, 2007) at 291. 97 conservatives might not accept the notion of genetic enhancement of their future newborns. Enhancement will become the sole domain of the very wealthy and privileged.235 Affluent groups will further enhance and modify the genome of their offspring until they reach a point where, due to genetic difference, the highly enhanced will no longer be able to procreate with the unenhanced, normal human beings. Thus, from a taxonomical point of view, highly genetically enhanced people will break away and possibly form a new species. Additionally, the more the genome of the highly enhanced will become modified, the larger is the risk they will further drift away from the foundations of the human species. This foreseeable scenario of species divergence threatens to irreversibly harm the shared integral identity of all members of humankind.
VII) Evaluation of the Future Generations According to Views on
Species Perfection
The calls for the human species to undergo genetic transformation are based upon underlying assumptions concerning inherent flaws in humanity that devaluate from the value of human in human dignity. According to Bostrom’s vision for reshaping the human species, “Transhumanists view human nature as a work-in-progress, a half-baked beginning that we can learn to remold in desirable ways. Current humanity need not be the endpoint of evolution.” Bostrom describes in the same breath the biological problems of humanity: aging, diseases, cognitive deficits, deceitfulness, etc.236 Adopting the notion that human species is merely a flawed, incomplete work-in-progress, can gravely hurt the essence of dignity by suggesting that humans do not possess
235 F Fokuyama, Revolution (New York: Macmillan 2003) at 171. 236 Nick Bostrom,”Human Genetic Enhancements: A Transhumanist Perspective” (2004) 37:4 The Journal of Value Inquiry 493 at 499 98 incommensurable worth but are rather an intermediate evolutionary chain in the link to superior species. The sense that the human race is flawed differs from the sense that the human race is dignified. The attempts to assign value according to the quality of the genome is in itself a violation of Kantian inherent and incommensurable dignity.237
Enhanced persons might subjectively feel they are receiving attributed but not inherent dignity from society. Such dignity will be given to the enhanced mostly insofar as genetic
“flaws” are treated and eliminated and insofar as their enhancement departs from imperfections in the human species. Furthermore, unenhanced persons might feel their inherent dignity subjectively diminished and violated by attempts to assign them value.
Genetic enhancement programs for species perfection will send a message to normal human beings of their lack of inherent worth. Humans in a ‘post-human’ age might feel that they are only a somewhat rational, somewhat intelligent, somewhat respectable species in a comparison to a superior, upper breed, of highly genetically evolved post- human species.
A Transhumanist consequentialist attributed dignity approach does not see eye to eye with the Kantian approach that dignity might be diminished. The attributed dignity approach claims that species perfection can do a lot to promote excellence in humanity that will increase the amount of dignity people receive. The excellence will exceed the potential harms and thus will satisfy the moral consequentialist calculus. A consequentialist critique of the deontological-based prohibition on genetic enhancement would argue that it devotes too much attention to the perils without considering the potential benefits of human genetic interventions. 238 However, the Explanatory Report directly recognizes the great benefits that can be derived from the accumulation of
237 Supra note 8 at 7. 238 Supra note 6 at 437. 99 genetic knowledge and how its application can yield positive prospects for humankind.239
Still, the potential benefit that serves the interests of private individuals does not warrant disrespect for human dignity and potential violations of this cherished human right in the application of genetic sciences.240 The prohibition on germline modification unconditionally adheres to human rights in the face of irreversible threats to humankind as a whole, notwithstanding the possible gains to those who would undergo genetic enhancement.
VIII) Instrumentalization of Future Generations for the Cause of Species
Perfection
One need not be a Transhumanist to hold the view that the merits of humankind are to be balanced with its flaws. However, there is a great difference between realizing that this species might be the pinnacle of perfection and actively pursuing the objective of attempting to revise the outcomes of human evolution via genetic engineering. Attempts at species perfection will make use of future generations as an instrument for an objective that is external to their own lives. Predecessor generations that pursue the goals of species perfection might not only impact the essential characteristics of future newborns, but also may determine whether these newborns will remain inside the boundaries of the human species. To embark upon a path intended to perfect humanity by introducing inheritable genetic modification is a decision of the few. It comes at the expense of treating future generations as an instrument for achieving satisfactory results
239 Explanatory Report, The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 89. 240 Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Section 14(3).
100 for an “unfinished evolution.” The power to intentionally direct the course of evolution via inheritable genetic modifications will be harnessed by future generations to inevitably chain all subsequent generations in the shackles of genetic manipulation in an unbreakable bondage for ages to come.
Already in 1985, the German philosopher Hans Jonas vividly illustrated the foreseeable instrumentalization of future generations: “Technological mastered nature now again includes man who (up to now) had, in technology, set himself against it as its master …
But whose power is this – and over whom or over what? … The other side of the power of today is the future bondage of the living to the dead.”241 Jürgen Habermas has embraced the influence of Hans Jonas as well as Kant’s view on instrumentalization in his attempts to develop an explanation regarding the instrumentalization of future generations. For Habermas, the act of genetic enhancement places the intervener above the intervenee in a relation of non-equals when the former attempts to extract power later. In Habermas’s view, people should be treated in a manner that allows them freedom to be the author of their own life story. Yet for genetically modified persons, the act of attempting to change their characteristics and behaviors to appeal to the specific preconceived tastes of their designers is to treat them with a diminished role in the shaping of their lives. Genetic designers attempt to constraint the capacity to self- actualize one’s human potentiality. This approach treats potential persons as created objects, and attempts to dominate their selfhoods, their behaviors, and their natures. The attempt to dominate these human beings by genetically redesigning them to fit a set of preconditions treats them as instruments.242
Our potential power to design future generations does not mean that we are entitled to use such power to bend future generations to our wills. According to the views of some,
241 H Jonas. Technology, Medicine and Ethics(Frankfurt : Suhrkamp.1985) at 165. 242 J Habermas, The Future of Human Nature (Cambridge, UK: Polity Press, 2003) at 48. 101 whether or not society reaches genetic perfection, it will nevertheless be free from forcing subjective views on faultlessness on the genetic constitution of future generations.
IX) Denial of Self-Determination of Future Generations
A variety of human rights instruments and moral approaches assert that previous generations are obliged to take decisions that profoundly affect future generations in a manner that respects their interests.243 The interest of future generations is also a central consideration behind the Biomedicine Convention's use of the precautionary principle, which attempts to exercise prudence in the face of irreversible threats to the human condition. The Biomedicine Convention adopts precautious measures in the face of permanent and irreversible alteration of the human genome that will forcefully bind the lineage of all the offspring of the genetically modified persons. The decisions about far- reaching, inheritable, genetic modifications might potentially direct the evolutionary path of humankind. Such decisions about the future of the species cannot be forced upon future generations in a manner that denies them self-determination. Future generations most affected by major genetic alterations can reshape their member species, but paradoxically will have no freedom of choice if born into a pre-existing family of human interspecies.
Drastic choices that can potentially influence the genetic profile of a species cannot be given consent from those that are yet to be born. Furthermore, according to the common heritage property doctrine, such far-reaching decisions, which include the alteration of the species, cannot be made on behalf of humankind as a whole. The
243 Roberto Andorno, “Dignity of the Person in the Light of International Biomedical Law” (2005) 55:1 Medicina e Morale 165 at 167. 102 premises of the law cannot assume consent from either humanity as whole or from unborn future generations, even if they could have expressed their intentions.
The American UCLA biophysicist, Gregory Stock, however, suggests that future generations will agree to be genetically enhanced if the remaining “natural” human beings are living as inferiors at the mercy of superior creatures to whom they might be at most an entertaining exhibit from an antiqued age.244 Assuming that Stock is correct and future generations will agree to be genetically modified, will it be a full consent or might it be a result of a grim lack of viable options in the face of a fierce survival-of-the-fittest-styled
“genetic arms race?” The potential for a genetic arms race, in which people might have no other option but to choose genetic enhancement for their survival, can be avoided with a proper legal response. The Council of Europe and the European member states have responded to such challenges with Article 13 of the Biomedicine Convention.
X) Conclusion
The rationale of Article 13 recognizes that the human genome is the major biological building block of a person, and, indeed for the entire human species. The common heritage property doctrine protects the human genome as a resource shared by humanity.
The doctrine protects the shared human genome from potentially irreversible damage by inheritable genetic manipulations. Radical and irreversible germline genetic alterations threaten human dignity in an unprecedented manner as they can irreversibly harm the shared human identity of the species by breaking the biological bond that encloses all humans into a world community. The attempt to force subjective views of species perfection on future generations of humanity will surely be dehumanizing in as much as
244 G Stock, Redesigning Humans: our inevitable genetic future (New York: Houghton Mifflin, 2002) at 147. 103 persons will be used as instruments to realize the dreams of predecessor generations.
These far-reaching genetic decisions regarding species perfection will reverberate through future generations, and bind human beings to preferences of preceding generations.
Article 13 prevents the instrumental binding of future generations via constraints on inheritable genetic modifications that preserve the dignity of humankind.
104
Part 4. Recommendations and Summery
Chapter One
Recommendations
I) Prenatal Human Genetic Enhancement Justifies a Legal Prohibition
Previous chapters have offered a detailed account of the reasons why the Biomedicine
Convention has seen fit to prohibit prenatal human genetic enhancement. Though the prohibition’s justification recognises that genetic technologies may be potentially beneficial for some, it is quick to point out that enhancement poses a significant threat to human rights. The Biomedicine Convention’s strong stance on human rights is consistent with its underlying primacy principle, stated in Article 2, which asserts that human dignity “shall prevail over the sole interest of society or science,” including over private economic interests.245
The legal theory I have developed has shown that the justification for the convention’s prohibition on genetic enhancement is internally coherent, in that each rationale reflects an element of Kant’s philosophy of dignity. The three elements of Kant’s philosophy of dignity are as follows: the duty to affirm the inherent and incommensurable worth of humanity, the duty not to treat persons as mere instruments, and the duty to respect personal autonomy along with the right to self-determination without external
245 The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Article 2.
105 impediment. The prohibition is supported by the logical thread which runs through each of its rationales, and is consistent with similar international legal instruments, such as
UNESCO’s Universal Declaration on the Human Genome and Human Rights (1997), which are dedicated to the protection of human rights from the application of biomedicine.
The prospect of permanent and irreversible harm to the human genome, combined with the threat to human rights posed by prenatal human genetic enhancement, warrant the application of the precautionary principle. The precautionary principle is a core aspect of the Biomedicine Convention.246 The European Court of Human Rights has also given attention to the precautionary principle by statinag in the environmental case of
Tartar and Tartar V. Romania affirms that "[t]he ‘evolution of [this] philosophical principle to a legal standard"247Policy makers rely on the precautionary policy to make guided and informed policy decisions in the face of scientific and technological uncertainty.248 The precautionary principle sets four main conditions for permitting a suspect technology: the duty to prevent harm; the burden of proof of harmlessness on the proponents rather than the public; the duty to examine all alternatives; and the need for open, informed, and democratic decision-making.249
In light of the precautionary principle’s condition of the duty to prevent harm, this thesis has presented a detailed account of how parental human genetic enhancement denies genetically designed persons the right to freely self-determine their lives, thereby violating their human right to dignity. This threat to human rights justifies the
246 Stephen P. Marks, “Tying Prometheus Down: The International Law of Human Genetic Manipulation” (2002) Chicago J international L 115 at 118. 247 Tafltar and Tafltar v Romania [01, 5 July 2007 ] European Court of Human Rights J Pettiti No. 6701/01. 248Owen McIntyre &, Thomas Mosedale, “Precautionary Principle as a Norm of Customary International Law” (1997) 9 J. Envtl. L. 221 at 221. 249 Stephen P. Marks, “Tying Prometheus Down: The International Law of Human Genetic Manipulation” (2002) 3:1 Chicago J international L 115 at 118. 106
Biomedicine Convention’s prohibition on the creation of genetically enhanced newborns.
Genetic intervention not only threatens human rights, it also bears the risk of irreversibly threatening the human genome. The potential for harm is not restricted to those who have been genetically modified, but the inheritable alteration of the genome will also be transferred to all their subsequent offspring.
The proponents of human genetic enhancement often contend that the harms posed by the technology have to be proven prior to the restriction of genetic enhancement.
Bostrom argues that the burden of proof about the harms of human genetic enhancement is on those who wish to prohibit it. 250 The precautionary principle, however, shifts the burden of proof about the lack of harm from human genetic non- therapeutic interventions to those who wish to repeal the prohibition. The precautionary principle wishes to avoid a situation in which the public is in charge of proving the risks of technology that might be potentially hazardous to it. The proof of such risks, however, might only be obtained by the public after irreversible harm to the human genome has occurred.
Another key requirement of the precautionary principle is the lack of suitable alternatives. In order to understand this key requirement, one first needs to understand the purpose of genetic intervention. The arguments on behalf of a removal of the ban on human genetic modification often use a line of reasoning which supports the prevention of genetic diseases.251 The Biomedicine Convention takes a highly balanced approach with respect to medical needs and the prevention of diseases, and permits the use of pre- implementation genetic diagnosis for therapeutic reasons. Therapeutic measures to ensure the health of a newborn are more than sufficient in the vast majority of
250 Nick Bostrom, “In Defence of Post Human Dignity” (2005) 19:3 Bioethics at 210. 251 Martin Gunderson, “How the Use of Human Rights Treaties to Prohibit Genetic Engineering Weakens Human Rights”(2008) 18:1 Journal of Evolution and Technology at 28.
107 medical cases where human genetic modification is not required. Even in highly rare cases where PGD can help to avoid congenital diseases, these cases are resolved today by way of sperm or ova donation. There is no reason why such course of action should not persist in the future. Genetic engineering of future newborns raises great concerns about commodification, eugenics, and human species division, concerns that strongly tilt the legal solution in favour of a full ban on newborn germline modification.
The last requirement for use of the precautionary principle is democratic deliberation. The Council of Europe’s Biomedicine Convention is a result of significant consultation at various European and international forums of decision-making involving various experts, officials, and ministers. Countries that have ratified the convention have done so through the proper legislative channels of parliamentary democracy. The overall process that has led to the adaptation of the prohibition on non-therapeutic genetic interventions has been approved by various levels of democratic governance. Further discussion is essential for public understanding of the subtleties of the relevant legal policy, and of some of the less obvious perils associated with prenatal human genetic modification.
As one can see, the Biomedicine Convention on prenatal human genetic enhancement is justified on the grounds of the precautionary principle. As the aforementioned legal theory has shown, all of the principle’s requirements – both logical and technological – have been met.
108
II) Promoting better Understanding the Legal Theory behind the Prohibition on Human Prenatal Genetic Enhancement in the Legal Community
While the legal theory I have developed is in the form of a theoretical inquiry, it may also help with the practical adjudication of related cases in court. A central motivation for this thesis is to supply judges and regulators with a deeper understanding of the
Biomedicine Convention’s prohibition on genetic enhancement, which, in turn, will facilitate clearer interpretation and adjudication. A correct understanding of the Kantian nature of the prohibition is essential for an effective application of the legal text, and for the avoidance of error which might arise from the seemingly vague notion of dignity. I have shown, in the context of the prohibition on prenatal human genetic enhancement, that the right to human dignity, as expressed in Kantian deontology, is inviolable. This is exemplified in Article 26, which asserts that the rights articulated in Articles 13 and 14 are protected as absolute, and cannot be suspended under any condition.252 I have also shown, that due to complexities in the drafting process, Article 12 does not distinguish between a postnatal context (wherein relative rights are protected), and a prenatal context
(wherein absolute rights – that reflect deontological thinking – are protected). The inviolable nature of the aforementioned Articles cannot allow adjudication and regulation to create utilitarian-based exceptions to the prohibition on genetic enhancement, and not conflict, at the same time, with Kant’s deontological philosophy of human dignity. Judges might easily misinterpret the right to human dignity, which underlies the prohibition, as a relative right, and attempt to use it within a variety of legal ‘balancing’ tests. Balancing tests established on incompatible utilitarian thinking might treat dignity and liberty rights as relative rights and balance them with germinal choice, which, as John Robertson
252 Roberto Andorno, “The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law” (2005) 2 Journal of International Biotechnology Law 133 at 140.
109 argues, is protected under proactive liberty.253 Simply put, the deontological nature of the
Biomedicine Convention’s prohibition on prenatal genetic enhancement does not allow for utilitarian judicial legal constructions such as a balancing test to interfere with the prohibition on newborn genetic enhancement.
III) Legal Indications for Estimating the Severity of Violation for the
Prohibition on Prenatal Genetic Enhancement
Judges and regulators who will face genetic enhancement cases will require a toolkit in order to identify the prohibited non-therapeutic genetic interventions. The chapter regarding the therapy/enhancement distinction classifies genetic interventions according to these two categories. I hope to make a modest contribution by providing several legal indications that might assist judges and regulators in detecting the severity of prohibited, non-therapeutic, genetic interventions. The indicators I suggest are logically derived from the same legal theory which lies behind the prohibition, since the ethical concerns that lead to the prohibition of prenatal genetic enhancement are also present when such activity occurs. I do not think, however, that the logical, ethical, and factual complexity of prenatal genetic enhancement activity enables the development of comprehensive legal tests. Only legal indications as to the severity of prohibitionary infringement can be derived. The indications I suggest here are by no means intended to serve as legal tests, but rather to give judges and regulators possible guidelines to assess the severity of each violation. The complex nature of the therapy/enhancement distinction can cause great difficulty for judges.
253 In the continental European context, it can be at least prima facie derived from the prohibition on prenatal genetic enhancement that there is no constitutional right to germinal choice under reproductive liberty. 110
The preliminary judicial step which must be taken in order to establish a violation is the classification of a genetic intervention as either ‘therapy’ or ‘enhancement.’ In defining enhancement, the judge in question should refer to national screening regulations. These screening regulations set are restrictive than the therapy/enhancement distinction in the
Biomedicine Convention as it permits interventions according to very specific criteria.254
There are no known screening regulations that permit enhancement amongst the countries that ratified the Biomedicine Convention. These countries that would not prohibit non-therapeutic genetic interventions might infringe the respective provisions set in articles 12-14 of the Biomedicine Convention. In cases where particular countries do not have such regulations in place, I have suggested, in my chapter on the therapy/enhancement distinction, that judges should rely upon an objectivist approach to the distinction. The objectivist approach clearly cannot resolve all the scomplexities that arise from using the problematic therapy/enhancement as a legal standard, yet it provides an alternative that is more reliable that the uncertain subjectivist approach. The objectivist approach might better assist judges in classifying genetic interventions according to objective, quantifiable, parameters, with reference to median statistics in a corresponding reference population. For instance, a newborn, slightly below the median height, may not be at risk of severe health concerns, in comparison to a corresponding reference population. Ascribing to a more objective account can help to increase the certainty and predictability of a legal result. These procedural values can be further supported by expert evidence from biomedical scientists. Such evidence is far more trustworthy than the potential for judicial bias. Yet the ability of the objectivist approach alone is still limited in its ability to increase legal certainty and cannot resolve all the complexities that arise from the therapy/enhancement distinction, Some of these
254 Bartha M.Knoppers and Rosario M.Isasi," Regulatory Approaches to Reproductive Genetic Testing", (2004) 19:12 Human Reproduction 2965 at 2696. 111 complexities can be overcome by promulgation of bright line rules that will serve as an approximation for the results the classification between therapy and enhancement.
After it has been judicially established that a genetic intervention classifies as
‘enhancement,’ indicators for the severity of the violation can be inferred from Kantian legal theory. The first indicator is derived from a violation of a person’s incommensurable dignity. Such a violation takes place when the worth of a person’s genetic characteristics is evaluated. Third parties can evaluate a particular child by judging the appeal of its genetic profile, including such features as eye and skin colour, sexual orientation, and intelligence. The greater the insistence on a particular set of traits, the greater the degree of dignity-violating evaluation. Parents wishing to avoid a dark-skinned child, for example, might be willing to pay substantial amounts of money to screen extensively against dark skin complexion genes and/or to engineer the germline in order to ensure fairer skin. The fact that third parties can potentially pass judgment on a child through the lens of a desired characteristic, such as skin colour, undoubtedly violates that child’s inherent and incommensurable right to dignity.
The second indication of the severity of dignity-violating enhancement is the instrumentalisation of a child according to third party desires. The greater the degree to which third parties project their desires onto the genetic composition of designed children, the greater the degree of instrumentalisation. For instance, parents may attempt to intervene on a large cluster of genetic traits for the specific purpose of creating, say, an excellent fighter pilot, by genetically designing him/her to have great physical stamina, the ability to withstand high altitudes, and superb eye-hand coordination. Extensive intervention on a child’s genetic profile for the sake of desirable features chosen by third parties treats the child not as an end, but as a mere means. Such intervention constitutes a severe violation of the prohibition on prenatal genetic enhancement. 112
IV) Deterring from Prenatal Genetic Enhancement Through Adequate Penal Sanctions
Maintaining a vital legal prohibition requires more than interpreting, understanding, and detecting possible infringements, it requires adequate legal sanctions as well. Adequate sanctions are essential in order to effectively direct people towards legally permissible activity and to deter them from impermissible courses of action. Still, several member countries of the convention have yet to instated sufficient sanctions for the violation of the prohibition prenatal genetic enhancement. For instance, the sanction on the section in Article 6(2) of the
Norwegian Act on the Use of Biotechnology in Human Medicine 2005 for infringement on germline alteration as prohibited by Article 7(5) to the same law is " Any person that willfully contravenes this Act or provisions laid down pursuant thereto is liable to fines or to a term of imprisonment not exceeding three months. An accomplice is liable to the same penalties."255 An infringement of the prohibition on germline modification in the Norwegian Act on the Use of Biotechnology in Human Medicine 2005 is a summery offence, the least on the scale of the criminal activities. As the sanction of short imprisonment term is unlikely in a miniscule summery offence.
The unlikelihood of imprisonment leave only the option of a fine, which will not provide a sufficient deterrent from the criminal activity that its potential gains surpass of the fine several times. In order to combat of this disproportional sanction, I recommend that the violations of the prohibition on prenatal genetic enhancement will be raised to the level of a felony, a crime of high seriousness, for which a maximum sentence is imprisonment in excess of one year and substantial monetary fines in tens or hundreds of dollars. Establishing an adequate and deterring sanction for infringement of the prohibition on prenatal genetic
255 Act of 5 December 2003 No. 100 Relating to the Application of Biotechnology in Human Medicine, Section 7(5). 113 enhancement will lead to a greater degree of compliance with the prohibition on prenatal genetic enhancement.
Moreover, a proper sanctioning is also important from deterring in today’s globalized world, when Europeans can easily cross to countries such as the US that have no regulation on genetic interventions. Extra territorial enforcement might possible under the criminal law doctrine that creates jurisdiction when the case is tied to the country with the criminal ban by the citizenship of the parents and the genetically intervened child and the consequences of the illegal activity. However, the optimal legal solution regarding genetic enhancement is more systematically, meaningly to achieve a broader legal consensus and harmonization of laws to instill the prohibition of prenatal genetic enhancement beyond the boundaries of continental Europe.
V) The Need for Further Harmonisation of Genetic Interventions Law
Francis Fukuyama, a prominent American intellectual, asserts that the challenges associated with human genetic interventions are far too great for the individual state to take on alone, and that broad-minded international co- operation is required for successful mitigation of such interventions.256
Cooperation in the form of harmonisation is essential for securing countries to be active and compliant participants in the endeavour to prohibit human genetic enhancement.257 Novel technological challenges often have trans-border implications that affect both the host country and other countries around the
256 Laura Colleton, “The Elusive Line Between Enhancement and Therapy and Its Effects on Health Care in the U.S." (2008) 18:1 Journal of Evolution and Technology 70 at 70. 257 Maxwell J Mehlmant & Kirsten M Rabel, “Any DNA to Declare? Regulating Offshore Access to Genetic Enhancement” (2002) 8 American Journal of Law &Medicine 145 at 213. 114 world, as well. In light of such trans-border implications, countries would do well to adopt the principle of reciprocity to mitigate the great challenges of prenatal genetic enhancement. Patrick Molinari, a Canadian legal academic, concludes, in regard to the Biomedicine Convention that, “[w]hat is forbidden in one country because it violates the integrity and dignity of human beings, should not be allowed in another country that pretends to share the same basic human values.”258
Peter Singer argues that in today’s globalised world, in which people can easily cross borders, the lack of harmonisation in reproductive laws might render more restrictive standards in some countries ineffective, due to reproductive tourism.
Couples will tour to the particular jurisdiction where the laws are friendly to their reproductive ends. For example, American couples often travel to different states with more relaxed reproductive laws concerning surrogacy to gain access to the technology they feel will best serve their goals.259 The relative ease with which people can change jurisdictions to avoid the law in their country of residence, boldly emphasises how the standards of local law, in an age of globalisation, rely more than ever upon international co-operation. The
Biomedicine Convention itself recognises the vital importance of international co-operation for the sake of safeguarding the genetic integrity of human beings.260
258 Patrick A Molinari, “The Convention on Human Rights and Biomedicine: A Canadian Perspective” (1998) 5 European Journal of Health Law 349 at 355. 259 Peter Singer, “Shopping at the Genetic Supermarket” in S. Y. Song, Y. M. Koo & D. R. J. Macer (eds.), Asian Bioethics in the 21st Century, (Tsukuba: Eubios Ethics Institute 2003) at 151. 260 Ismini Kriari - Catranis , “The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Eubios” (2002) 12 Journal of Asian and International Bioethics 90 at 91. 115
VI) Using the Biomedicine Convention as a Platform for Promoting
Further Harmonisation of Genetic Interventions Law
The Council of Europe’s Biomedicine Convention is a prominent example of how international biomedical law might serve as a platform for broader consensus-building in regard to biomedical legislation.261 First and foremost, non-signatory member states that lack biomedical legislation are excellent candidates for further adaptation of the convention. The Council of Europe’s Biomedicine Convention is already a prominent source of reference for human rights.262 The establishment of a prohibition on the human right to dignity can be a successful strategy for harmonisation in countries that affirm a universal obligation toward the rights of all humanity.
The European Biomedicine Convention might be the most appropriate international law instrument to accommodate further harmonisation developed to date. It is the only known international legal instrument which is not ‘soft law’ and is legally binding. It is in force in some of the most developed nations with a strong biotech sector such as France,
Spain, and Switzerland.
The Council of Europe is not only one of the most important organisations in the
European human rights law system, it is also influential internationally, as countries including Japan, Australia, Mexico, and Canada have adopted its instruments. Canada might wish to join the prohibition on human genetic enhancement, since its respective law, the Assisted Human Reproduction Act (2004), is established upon the core value of dignity. Article 2 (B) of the Assisted Human Reproduction Act states that human dignity is a core value which is treasured and protected.263 Article 2 (f) explicitly condemns the commodification of dignity: “Trade in the reproductive capabilities of women and men and
261 Fujiki, Norio & Macer, Darryl R.J., Bioethics in Asia, (Christchurch: Eubios Ethics Institute, 1998) at 256. 262 Supra n. 267 at el. 263 Bill C-13, Assisted Human Reproduction Act, 2nd Sess 37th Parl, 2004 cl 2(f). 116 the exploitation of children, women, and men for commercial ends raise health and ethical concerns that justify their prohibition.”264 The Canadian prohibition on commodification and exploitation of children in a reproductive context is congruent with the Biomedicine
Convention. Such a congruency might warrant a Canadian regulation regarding the pre- implementation of genetic testing so as to prohibit genetic enhancement in the future.
Despite the merits of the Biomedicine Convention, I am in great doubts as to its ability to achieve a broader global consensus among countries that bear less respect for human rights in general and for human dignity in particular. The convention’s emphasis on
Kantian dignity might also be an impediment on the road to a further consensus. Dignity is a key value among Continental European ethicists, yet its normative domain does not usually extend to America’s individualistic bioethics discourse.265 Furthermore, the convention’s attentiveness to the concept of Kantian dignity may not be widely accepted beyond continental borders, since the concept is often perceived by more pragmatic nations as a burdening impediment to the growth of the modern market.266 Dignity-based arguments are often perceived as burdensome, Euro-centric, and idealistic, and as in opposition to the more prevalent worldview of pragmatism. The concept of human dignity may be perceived by some countries with non-European values as vacuous and irrelevant in establishing an international consensus on the prohibition of enhancement technologies that these countries see, prima facie, to be highly beneficial. A focus on
‘potential benefits’ might cause additional difficulties in adopting common international norms for human genetic enhancement.267
264 Ibid. 265 Matti Hayry, “Another Look at Dignity” (2004) 13 Cambridge Quarterly of Healthcare Ethics 7 at 7. 266 Nick Smith,”Commodification in law: ideologies, intractabilities, and hyperboles” (2009) 42:1 Continental Philosphy Rev 599 at 607. 267 Stephen P Marks, “Tying Prometheus Down: The International Law of Human Genetic Manipulation” (2002) 3:1 Chicago J international L 115 at 121. 117
VIII) Development of a Broader International Consensus by an Alternative
Legal Theory Based on Equality of Opportunity
A successful attempt at harmonisation must bridge the rights between different camps: the essentialist and neo-liberal, the conservative and liberal, and the secular and religious.268 A candidate value that might transcend the morally relativistic world of differing regional ethics is that of ‘equal opportunity.’ John Rawls, one of the leading legal thinkers of our time, argues that equality of opportunity is a universal principle, and an essential component of a theory of justice.269 Peter Singer asserts that the “most significant ground for objecting to a genetic supermarket is its threat to the ideal of equality of opportunity.”270 A prohibition on the threat of human genetic enhancement which relies upon the value of equal opportunity as a rationale for preventing such a threat might forge a consensus among developing and developed nations alike.
A non-dignity-based legal theory might achieve a broader recognition in countries with non-European values, leading to a greater consensus for global harmonisation. The path to harmonisation might be paved if such countries recognise the significance of safeguarding what they perceive to be the more internationally respectable value of equality of opportunity. A legal theory centred on ‘equality of opportunity’ can be the basis for the establishment of an internationally-recognised convention which unites nations, not only from continental Europe, but from the many corners of the world.
A legal theory centred on equality of opportunity can potentially be established on the premise that the inevitable barriers to the technological distribution of genetic enhancement will severely hinder the ability of persons to freely compete in the
268 Ibid at 134. 269 J Rawls, A Theory of Justice, (Cambridge, Harvard University Press 1971) at 265. 270 Peter Singer, “Shopping at the Genetic Supermarket” in S. Y. Song, Y. M. Koo & D. R. J. Macer (eds.), Asian Bioethics in the 21st Century, (Tsukuba: Eubios Ethics Institute 2003) at 153 .
118 marketplace. Genetic enhancement technologies are highly likely to be priced beyond the reach of the vast majority of the world population. Furthermore, it is highly improbable that health insurance companies will be willing to finance the high costs of genetic non-therapeutic enhancement interventions.271 Genetic enhancement technology prices are likely to cost up to hundreds of thousands of dollars, leaving the purchase of such technology in the sole domain of a small fraction of the world population.
Wealthy families will be able to genetically intervene on their children to give them the benefits of the best genes, on top of the best schooling, training, and resources.272 Income inequalities will be severely exacerbated by an added level of genetic inequality in which social class, opportunities, and success will be largely influenced by the genetic makeup of designed children. Wealthier buyers of enhancement technologies will be able to obtain genes for improved intelligence, emotional resilience, social personality, and athletic ability. The superior traits of the enhanced will be translated to superior positions over the unenhanced.
Education, career prospects, and various markets, (including further genetic enhancement), will be beyond the access of the non-wealthy. The genetically enhanced will bastion and perpetuate their dominance over the markets as their genetic enhancement is passed onto the genome of their offspring.273 These widening gaps between the rich and poor have great potential to undermine the values of equal opportunity and social mobility, both of which are vital for the sense of justice in a healthy society.274 Establishing the prohibition on prenatal
271 Steven E Hyman, “Cognitive Enhancement: Promises and Perils” (2011) 69 Neuron 595 at 597. 272 Ibid. 273Peter Singer In S. Y. Song, Y. M. Koo & D. R. J. Macer (eds.), Asian Bioethics in the 21st Century, (Tsukuba: Eubios Ethics Institute 2003 at 153. 274 M Mehlman & J Botkin, Access to the Genome: The Challenge to Equality, (Georgetown University Press, Washington, DC, 1998) at 6. 119 genetic enhancement in an international law instrument on the grounds of equal opportunity can lead to a broader international legal consensus to safeguard both the value of human dignity and the value of equal opportunity.
120
Chapter two
Summary
Reproductive biotechnology is rapidly approaching a true mastery of life. It now offers third parties the power to determine the genetic constitution of a newborn, and the power to influence the way in which that newborn will grow. Third parties will be able to customise a child, from a vast range of genetic profiles, according to desired specifications including: eye colour, skin tone, athletic capability, and intelligence. Third parties will also be able to customise for more intangible traits associated with cognitive autonomy, personality type, emotional make-up, and social behaviour. Such mastery will soon be realised due to recent advances in emerging biotechnologies.
The technology of pre-implementation genetic diagnosis is now moving towards the frontiers of human enhancement. This technology allows for the selection of the best available newborn according to the optimal characteristics yielded by the parental genome. With the use of germline engineering, the parental genome will cease to be a barrier to genetic design. This will enable an even greater degree of customisation of a newborn’s genetic characteristics. In the future, DNA from other biological parents, human and/or non-human, might be routinely inserted into embryos for the purposes of genetic enhancement.
The ability to intervene for non-therapeutic, enhancement purposes is strictly prohibited by the Council of Europe’s Biomedicine Convention. I have, during the course of my argument, posed questions as to how and why the Biomedicine Convention justifies the prohibition on genetic enhancement technologies. These technologies might contribute that newborns will be prettier, stronger, smarter, and socially adaptive. Apart 121 from mentioning the convention’s core value of dignity, the existing literature has not seriously attempted to answer such questions. The value of dignity has often been subjected to criticism for being highly vague and too ambiguous to justify the prohibition on human genetic enhancement.
This thesis has demonstrated the various ways in which prenatal human genetic enhancement can violate the right to human dignity as outlined in the Biomedicine
Convention. In response to this challenge, I have proposed a legal theory based on
Kant’s philosophy of dignity. I have shown how Kant’s philosophy of dignity identifies the ethical threats from prenatal genetic interventions, and how its careful application has led to the creation of a thorough account of potential human rights violations. I have divided Kant’s philosophy of dignity into three distinct elements: the inherent and incommensurable worth of humanity; the duty not to treat persons as mere instruments; and the right of persons to self-determination without external impediment. The
Biomedicine Convention’s underlying concept of dignity encompasses three distinct elements of Kant’s philosophy.
The three elements of Kant’s philosophy of dignity were incorporated into a larger theoretical framework in order to illuminate the theoretical foundations of the prohibition on enhancement. The overarching rationale for the prohibition is as follows: third parties wishing to perfect newborns in accordance with certain desires and specifications treat said newborns instrumentally, as mere means, instead of ends in themselves, thereby violating their dignity. This instrumentalisation of newborns is at the core of three rationales in the Biomedicine Convention. These rationales are tied together by a three-tiered hierarchical structure in which each rationale represents a higher magnitude of risk that the one before. The first rationale, operative at the individual level, is centered upon the prevention of the commodification of newborns. 122
The second rationale, operative at the societal level, centres on the objections to eugenic practices. The third rationale, operative at the species level, centres on the preservation of the genetic unity of the human species from irreversible modification to the human genome.
At the individual level, the dominant rationale of the Biomedicine Convention is the prevention of commodification. Commodification is an act that severely violates the
Kantian categorical imperative against treating people as mere means and not as ends.
The commodification of newborns threatens to corrupt an invaluable relationship by replacing the natural bond between parent and child with a process akin to the manufacture of a designer good. The process of turning persons into marketable designer goods attaches monetary price tags to human characteristics, such as height, skin color, and intelligence, in a manner that grossly distorts the notion of human dignity as an inherent and incommensurable property of every human being. The harms done by the commodification of the human genome will not only impact the individual. The emerging market for the human genome for the purposes of genetic design and enhancement will trivialise the basic genetic building block that constitutes the human person. The attempt to select and design persons as if they were market products turns them into objects rather than subjects and treats them as mere instruments in the service of others.
At the societal level, the Biomedicine Convention’s rationale is concerned with the prevention of eugenics, a movement which advocates for the improvement of genetic pools in society. The neo-eugenic movement contends that human genetic engineering should be embraced for the purpose of creating a faultless society. The neo-eugenic vision for creating a faultless society is likely to emerge without state intervention once genetic enhancement reaches a level of social acceptability. The reproduction of societal 123 norms will give prominent institutions an influential role in shaping their ideal vision for future society. Attempts to design persons according to the norms, wills, and desires of previous generations robs these persons of their capacity to fully self-determine their life paths. The manner in which previous generations can utilise eugenic programs to instill their vision of a faultless society upon future generations raises the risk of
“intergenerational tyranny.”275
Lastly, at the species level, the Biomedicine Convention takes a macro perspective on the safeguarding of human dignity through the preservation of the genetic unity of the human species. As a singular category, ‘the human species’ is likely to be the broadest group that has ever been protected under the law. The Biomedicine Convention has seen it fit to protect the human species as a whole from the potential threat of irreversible modification. All members of humanity own the human genome under the common heritage property doctrine that is a constituent part of the Biomedicine Convention. The collective nature of the doctrine is tailored to preserve the biological bonds that unite the entire human community. Radical and irreversible genetic manipulations of the human genome have the potential to break the very bonds that define human nature and identity. Academics from the most renowned institutions of higher learning have supported such radical genetic transformations, on the way to eliminating various flaws in the human species, including aging, low intelligence, and unethical behaviour. These academics would entrust human evolution to the hands of genetic engineers.276 Genetic engineering is prohibited by the Biomedicine Convention on the grounds that human dignity must be cherished and protected from irreversible harms that would modify the common heritage of humanity.
275 J Gunning & S Holm ,Ethics, Law, and Society Volume.2 (London: Ashgate Publishing, Ltd, 2005) at 151. 276Nick Bostrom, “Human Genetic Enhancements: A Transhumanist Perspective” (2004) 37:4 The Journal of Value Inquiry 493 at 500. 124
Genetic interventions give both parents and society an unprecedented power over the lives of newborns, a power which grossly violates a newborn’s right to dignity. Another great concern of the Biomedicine Convention is inheritable genetic modification that irreversibly harms the human genome. These concerns warrant the prohibition of prenatal human genetic enhancement under the precautionary principle which underlies the Biomedicine Convention. The Biomedicine Convention’s prohibition is consistent with international human rights law, and leads the world in the protection of human rights in the face of serious violations of the right to dignity. This singular focus on the right to dignity, however, at the sacrifice of economic gain, renders an image of the
Biomedicine Convention as a highly idealistic, non-pragmatic, Euro-centric legal instrument. According to critics of the Biomedicine Convention, its idealistic and not widely accepted set of values may hinder any necessary international cooperation for the enforcement of the prohibition on prenatal genetic enhancement. Others would argue that a globally agreed consensus on the ban on newborn genetic enhancement is achievable on the grounds that the inevitable concentration of genetic enhancement in the hands of the very wealthy will pose a grave threat to equal opportunity and to upward social mobility, both of which are essential to the economy and to personal well-being.
I have shown that the reason for the prohibition of prenatal genetic enhancement is that it can be willfully used by a preceding generation to determine a future generation’s characteristics, identity-related traits, and potentialities. Irreversible genetic intervention will tie children to the wills of their parents, new cohorts of society to their elders, and future generations to a utopian vision, a vision where the inherent ‘flaws’ of humanity have become obsolete. 125
This thesis has revealed that there is a systematic legal theory that elucidates the
Biomedicine Convention’s prohibition on prenatal human genetic enhancement. Yet this is by no means the end of legal research in the field. It is, rather, a new beginning.
Though this thesis has helped to provide a better understanding of the law, many questions remain: How can the legal community further a consensus on a global strategy to ensure that such harm will not come upon our own children? How can laws create efficient and sufficiently deterrent enforcement mechanisms to govern human genetic enhancement in an increasingly complex global regulatory environment?
The answers that the international legal community provides to these questions will shape the lives of generations to come. National legislators throughout the world will soon have to decide if they prefer giving third parties the unprecedented power to pull the strings of human lives at their most vulnerable stage. Laws that are attentive to human rights have ample ability to cut the strings that genetically control the identities, potentialities, and life paths of newborns, setting them free to begin their lives in dignity.
126
Table A – List of the Countries that Ratified the Biomedicine Convention
Status as of: 31/8/2012
Entry into States Signature Ratification force
Albania 30/3/2011 30/3/2011 1/7/2011 Bosnia and Herzegovina 16/12/2005 11/5/2007 1/9/2007 Bulgaria 31/5/2001 23/4/2003 1/8/2003 Croatia 7/5/1999 28/11/2003 1/3/2004 Cyprus 30/9/1998 20/3/2002 1/7/2002 Czech Republic 24/6/1998 22/6/2001 1/10/2001 Denmark 4/4/1997 10/8/1999 1/12/1999 Estonia 4/4/1997 8/2/2002 1/6/2002 Finland 4/4/1997 30/11/2009 1/3/2010 France 4/4/1997 13/12/2011 1/4/2012 Georgia 11/5/2000 22/11/2000 1/3/2001 Greece 4/4/1997 6/10/1998 1/12/1999 Hungary 7/5/1999 9/1/2002 1/5/2002 Iceland 4/4/1997 12/10/2004 1/2/2005 Latvia 4/4/1997 25/2/2010 1/6/2010 Lithuania 4/4/1997 17/10/2002 1/2/2003 Moldova 6/5/1997 26/11/2002 1/3/2003 Montenegro 9/2/2005 19/3/2010 1/7/2010 Norway 4/4/1997 13/10/2006 1/2/2007 Portugal 4/4/1997 13/8/2001 1/12/2001 Romania 4/4/1997 24/4/2001 1/8/2001 San Marino 4/4/1997 20/3/1998 1/12/1999 Serbia 9/2/2005 10/2/2011 1/6/2011 Slovakia 4/4/1997 15/1/1998 1/12/1999 Slovenia 4/4/1997 5/11/1998 1/12/1999 Spain 4/4/1997 1/9/1999 1/1/2000 Switzerland 7/5/1999 24/7/2008 1/11/2008 The former Yugoslav Republic of Macedonia 4/4/1997 3/9/2009 1/1/2010 Turkey 4/4/1997 2/7/2004 1/11/2004
Data taken from the Council of Europe's Treaty Office Website: http://conventions.coe.int/Treaty/Commun/ChercheSig.asp?NT=164&CM=&DF=&CL=ENG
127
Appendix A – The Genetically Engineered “Schwarzenegger Mouse”
The head of the Harvard research team that has inserted the Mysotanin gene into the mouse opposes using such genetic modifications to design physically enhanced newborns.
http://news.harvard.edu/gazette/1999/02.11/muscle.html
Images taken from the site of the National Academy of Sciences of The United States of America
http://www.pnas.org/content/98/16/9306.figures-only
128
Appendix B – A Genetically Modified Human Embryo With Green
Florescent Protein(GFP) Genes
129
Appendix C – A Genetically Modified Newborn Monkey With
Green Florescent Protein(GFP) Genes
130
Bibliography
Enactments
- The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Articles 1,2, 12, 13,14,26(1).
- Explanatory Report to The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, Oviedo, 4.IV.1997, Sections Preamble, 8,9,14,83, 89.
- Act of 5 December 2003 No. 100 Relating to the Application of Biotechnology in Human Medicine, Section 7(5).
- Bill C-13, Assisted Human Reproduction Act, 2nd Sess 37th Parl, 2004 cl 2(f).
Governmental Reports
- The Council of Europe Parliamentary Assembly, Recommendation 934 (26 January 1982) On Genetic Engineering.
Dictionaries
- Oxford Dictionary, 2d ed, sub verbo “Eugenics".
131
Web Articles
- Daniel Martin and Simon Caldwell, 150 Human Animal Hybrids Grown in UK Labs: Embryos Have Been Produced Secretively for the Past Three Years, Online :Daily Mail,
- Fergus Walsh, UK's First Hybrid Embryos Created, Online: BBC News
- Hannah Darby, Genetic Modification of Embryos: Information for Research License Committee
- David Derbyshire, Three-parent babies a step closer after watchdog gives research go-ahead despite 'life meddling' fears, Online: Daily Mail Online
- Nicholas Agar, Designer Babies: Ethical Considerations, online: www.actionbiosceince.org
- Jack Donnelly, Human Dignity and Human Rights, Online: Swiss Initiative to Commemorate the 60th Anniversary of the UDHR, Online: Human Dignity and Human Rights
- Critical Art Ensemble, Eugenics: The Second Wave, online: CTheory.net
- Council of Europe, Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine CETS No,: 164 ,online: Council of Europe,
- Julian Savulescu, Unfit for Life : Genetically Enhance Humanity or Face Extinction, online: Oxford Uehiro Centre for Practical Ethics
- Ronald Bailey, Random Genes vs. Designer Kids, Online :reason.com
- Stanford Encyclopedia of Philosophy, Kant's Moral Philosophy, online: Stanford Encyclopedia of Philosophy
Jurisprudence
- , W v. the United Kingdom, [8 July 1987], European Court of Human Rights at 27 Series A, no. 121-A.
- Tafltar and Tafltar v Romania [01, 5 July 2007 ] European Court of Human Rights J Pettiti No. 6701/01.
- Case Commune de Morsang-sur-Orge CE, [October 1995] at 372 , 27.
Articles
- Stefan Lorenz Sorgner, “Nietzsche, the Overhuman, and Transhumanism” (2009) 20:1 Journal of Evolution and Technology.
- S. F. Cooke and T. V. P. Bliss “The Genetic Enhancement of Memory” (2003) 60:1, Cellular and Molecular Life Sciences.
- ]Nikicia Zaninovic, “Genetic Modification of Pre Implantation Embryos and Embryonic Stem Cells (ESC) by Recombinant Lentiviral Vectors: Efficient and Stable Method for Creating Transgenic Embryos and ESC” (2007) 88:1 Fertility and Sterility.
- Maurizio Mori and Demetrio Neri Mori, “Perils and Deficiencies of the European Convention on Human Rights and Biomedicine” (2001) 26:3 Journal of Medicine and Philosophy.
- Ruth Macklin, "Dignity is a Useless Concept" (2003) 327:1 BMJ.
- Gilbert Hottois,”A Philosophical and Critical Analysis of the European Convention of Bioethics “ (2000) 25:2, Journal of Medicine and Philosophy.
- Ludger Honnefelder, “Bioethics and Human Genetics: Consensus Formation in Europe” (2001) 3:1 Ethics & Politics. 133
- Ismini Kriari - Catranis , “The Convention for the Protection of Human Rights and Dignity of the Human Being With Regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine” (2002) 12 Eubios Journal of Asian and International Bioethics.
- Roberto Andorno, “Dignity of the Person in the Light of International Biomedical Law” (2005) 55:1 Medicna e Morale.
- Laura Colleton, “ The Elusive Line Between Enhancement and Therapy and Its Effects on Health Care in the U.S." (2008) 18:1 Journal of Evolution and Technology.
- Stephen P Marks,” Tying Prometheus Down: The International Law of Human Genetic Manipulation”, (2002) 3:1 Chicago J international L.
- Susannah Baruch, “Preimplantation Genetic Diagnosis and Parental Preferences: Beyond Deadly Disease” (2008) 8:2 Houston Journal of Health Law & Policy. - Danielle Simmons, “Genetic Inequality: Human Genetic Engineering” (2008) 1:1 Nature Education.
- David B Resnik,”The Moral Significance of The Therapy- Enhancement Distinction in Human Genetics”(2000) 9 Cambridge Quarterly of Healthcare Ethics.
- Deryek Beylevald & Roger Brownsword, "Human Dignity, Human Rights, and Human Genetics" (1998) 61:15 The Modern Law Review.
- Norberto N G de Andrade, “Human Genetic Manipulation and the Right to Identity: The Contractions of Human Rights Law in Regulating the Human Genome” (2010) 7:3 Scripted.
- Colin Parker, “The Moral Primacy of the Human Being” (2010) 36:9 Journal of Medical Ethics.
- Roberto Andorno, “The Dual Role of Human Dignity in Bioethics” (forthcoming) Medicine, Health Care and Philosophy.
- Barbara Secker, “The Appearance of Kant's Deontology in Contemporary Kantianism: Concepts of Patient Autonomy in Bioethics” (1999) 24:1 J Med Philos.
- Matti Hayry, “Another Look at Dignity” (2004) 13 Cambridge Quarterly of Healthcare Ethics.
- Roberto Andorno, "The Oviedo Convention: A European Legal Framework at the Intersection of Human Rights and Health Law" (2005) 2 Journal of International Biotechnology Law. 134
- Patricia Baird, "Altering Human Genes: Social, Ethical and Legal Implications," (1994) 37 Perspectives in Biology and Medicine.
- Eric T Jungest, "Can Enhancement Be Distinguished From Prevention in Genetic Medicine?" (1997) 22 The Journal of Medicine and Philosophy.
- Maartje Schermer, “The Dynamics of the Therapy-Enhancement Distinction: Adhd as a Case Study” (2007) 79 Philosophica.
- Christian Starck, “Embryonic Stem Cell Research according to German and European Law” (2000) 7:7 German Law Journal. - Elizabeth Wicks, "The Meaning of ‘Life’: Dignity and the Right to Life in International Human Rights Treaties" (2012) 12:2 Human Rights Law Review.
- John Finnis, “Legal Enforcement of Duties To Oneself :Kant v. Neo-Kantian” (1987) 83:433 Colum LRev.
- Mark Komrad, “In a Defence of Medical Paternalism: Maximizing Patient’s Autonomy” (1983) 9:1 Journal of Medical Ethics.
- Judit Sándor, “Human Rights and Bioethics: Competitors or Allies? The Role of International Law in Shaping the Contours of a New Discipline” (2008) 27:15 Medicine and Law.
- Johanna K Nieuwenkamp, “The Convention on Human Rights and Biomedicine”, in: J D Rentdorff and P. Kemp (eds.), Basic Ethical Principles in European Bioethics and Biolaw, vol. II, (Barcelona: Centre for Ethics and Law, 2000).
- Stephen Riley "Human Dignity: Comparative and Conceptual Debates" (2010) 6:2 International Journal of Law in Context. - June M Z Makdisi, “The Protection of Human Life in the European Council’s Convention on Biomedicine” (2007) 7:1 The National Catholic Bioethics Quarterly. - Bagaric Mirko & Allan James, “The Vacuous Concept of Dignity” (2006) 5:2 Journal of Human Rights.
- Carl Elliott," Enhancement Technologies And Identity Ethics" (2004) 41: 5 Society.
- Michael Novak, The Stem Cell Slide: Be Alert to the Beginnings of Evil. In Stem Cell Controversy: Debating the Issues. (Amherst, NY: Prometheus Books, 2001).
- Nick Bostrom,”Human Genetic Enhancements: A Transhumanist Perspective” (2004) 37:4 The Journal of Value Inquiry.
- Jackie Leach Scully, Tom Shakespeare and Sarah Banks, “Gift not commodity? Lay people deliberating social sex selectiom” (2006) 28: 6 Sociology of Health & 135
Illness. - Guido Pennings & Guido de Wert, “Evolving ethics in medically assisted reproduction” (2003) 9:4 Human Reproduction Update.
- Eibe Riedel, “Global Responsiblities and Bioethics: Reflections on the Council of Europe’s Bioethics Convention” (1997) 5:179 Ind. J. Global Legal Stud.
- Orsolya Varga at el, “Definitions of genetic testing in European legal documents” (2012) 3:2 Journal of Community Genetics.
- P.-L. Fagniez, J. Loriau & C. Tayar, “Du Bébé Médicament au Bébé du Double espoir, (2005) 33 :10 Gynecologie Obstetrique & Fertilite”.
- Leon R Kass, “Triumph or Tragedy? The Moral Meaning of Genetic Technology” (2000) 45:1 Am. J. Juris.
- Michael J Sandel, “What Money Can’t Buy: The Moral Limits of Markets” Tanner Lectures on Human Values delivered at Brasenose College, Oxford, United Kingdom, May 1998.
- Nick Smith, “Commodification in Law: Ideologies, Intractabilities, and Hyperboles” (2009) 42:1 Continental Philosphy Rev. - Giorgio Resta, “The New Frontiers of Personality Rights and the Problem of Commodification: European and Comparative Perspectives” (2011) 26:33 Tulane European and Civil Law Forum.
- Merle Spriggs, “Lesbian Couple Create a Child Who is Deaf Like Them” (2002) 28: 283 J Med Ethics.
- Justo Anzar, "Designer babies A question of ethics”(2009) 59:6 Medicina e Morale.
- Robert J Boyle & Julian Savulescu, “Ethics of using PGD to Select a Stem Cell Donor for an Existing Person” (2001) 323:1240 British Medical Journal.
- Roberto Andorno, “Biomedicine and International Human Rights Law: in Search of a Global Consensus”(2002) 80:12 Bulletin of the World Health Organization.
- Martin Gunderson, “How the Use of Human Rights Treaties to Prohibit Genetic Engineering Weakens Human Rights” (2008) 18:1 Journal of Evolution and Technology.
- Anne-Emanulle Birn and Natalia Molina, “In the Name of Public Health” (2005) 95:7, American Public Health J. 136
- Josephine Quintavalle, Better by Accident than Design” in D Wasserman et al., Quality of Life and Human Difference:genetic testing, healthcare and disability, (Cambridge University Press),.
- Sonia M.Suter “A Brave New World of Designer Babies?” (2007) 22:897 Berkeley Technology LJ.
- Nicholas Agar, "Liberal Eugenics", (1998) 12:2 Public Affairs Quarterly.
- Elizabeth Fenton” The Perils of Failing to Enhance: a response to Persson and Savulescu”(2010) 36:3 Journal Medical Ethics.
- Elizabeth F Cooke, “Germ-line Engineering, Freedom, and Future Generations” (2003) 19:1 Bioethics.
- Andy Miah. “Genetic Selection for Human Enhancement” (2007) 4:6 Journal of International Biotechnology Law.
- Dov Fox, “The Illiberality of Liberal Eugenics”, (2007) 20:1 Ratio. - Ronnie D Lipschutz, “From Stakeholders to Shareholders: Fostering Global Economic Democracy through Usufruct Rights” (upcoming paper).
- Julian Savulescu, “Human-Animal Transgenesis and Chimeras Might Be an Expression of Our Humanity” (2003) 3:3 The American Journal of Bioethics.
- Steven E Hyman, “Cognitive Enhancement: Promises and Perils” (2011) Neuron.
- Pilar N Ossorio, “The Human Genome as Common Heritage: Common Sense or Legal Nonsense?” (2007) 35:3 Journal of Law, Medicine & Ethics.
- Owen McIntyre &, Thomas Mosedale, “Precautionary Principle as a Norm of Customary International Law” (1997) 9 J. Envtl. L. - Bartha M.Knoppers and Rosario M.Isasi," Regulatory Approaches to Reproductive Genetic Testing", (2004) 19:.12 Human Reproduction. - Laura Colleton, “The Elusive Line Between Enhancement and Therapy and Its Effects on Health Care in the U.S." (2008) 18:1 Journal of Evolution and Technology. - Maxwell J Mehlmant & Kirsten M Rabel, “Any DNA to Declare? Regulating Offshore Access to Genetic Enhancement” (2002) 8 American Journal of Law &Medicine.
- Leon R Kass, “Ageless Bodies, Happy Souls: Biotechnology and the Pursuit of Perfection”(2003) 1 The New Atlantis. 137
- Patrick A Molinari, “The Convention on Human Rights and Biomedicine: A Canadian Perspective” (1998) 5 European Journal of Health Law.
Book Chapters
- Nick Bostrom, "Dignity and Enhancement" at The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office 2008).
- Ubaka Ogbogu & Timothy Caulfield, “Human Dignity and Biotechnology Policy” in Paul Atkinson, Peter Glasnear & Margaret Lock, eds, Handbook of Genetics & Society: Mapping the New Genomic Era (London: Routledge, 2009).
- Adam Schulman, “Bioethics and the Question of Human Dignity” in The President Council on Bioethics, Human Dignity and Bioethics, (Washington: Government Printing Office, 2008).
- Julia Davis, “Doing Justice in Criminal Law” in Malpas & N. Lickiss,eds “Doing Justice to Dignity in the Criminal Law. In Perspectives on Human Dignity: A Conversation” (Dordrecht: Springer 2007).
- D Richards, “Sex, Drugs, Death, and the Law” 8 (Totowa: Rowman and Littlefield, 1982).
- Daniel P Sulmasy “Dignity and Bioethics” in The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office, 2008).
- Margaret J Radin & Madhavi Sunder, “The Object and Subject of Commodification” in Martha M. Ertman, Joan C. Williams, Rethinking Commodification: Cases And Readings In Law And Culture (New York: New York University Press, 2005).
- Leon Kass in The President’s Council On Bioethics, Beyond Therapy: Biotechnology And The Pursuit Of Perfection, (The President's Council on Bioethics, 2003).
- Margaret Olivia Little, ‘Cosmetic Surgery, Suspect Norms, and the Ethics of Complicity,’ in Erik Parens (ed.), Enhancing Human Traits: Ethical and Social Implications, (Washington, D.C.: Georgetown University Press, 1998).
- Nick Bostrom, "Dignity and Enhancement" at The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office 2008). 138
- Margaret Olivia Little, ‘Cosmetic Surgery, Suspect Norms, and the Ethics of Complicity,’ in Erik Parens (ed.), Enhancing Human Traits: Ethical and Social Implications, (Washington, D.C.: Georgetown University Press, 1998).
- Nick Bostrom, "Dignity and Enhancement" at The President Council on Bioethics, Human Dignity and Bioethics (Washington: Government Printing Office 2008).
- Peter Singer, “Shopping at the Genetic Supermarket” in S. Y. Song, Y. M. Koo & D. R. J. Macer (eds.), Asian Bioethics in the 21st Century, (Tsukuba: Eubios Ethics Institute 2003)
Books
- J Harris, Enhancing Evolution (New York, Princeton University Press 2010).
- D Feldman, Civil Liberties and Human Rights in England and Wales, (New York:Oxford University Press ).
- C Foster, Human Dignity in Bioethics and Law (Oxford: Hart, 2011)
- T Banchoff, Embryo Politics: Ethics and Policy in Atlantic Democracies, (New York: Cornell University Press, 2011).
- G O'Sullivan & R.A Ankeny, The Ethics of Inheritable Genetic Modification: a Dividing Line? (New York: Cambridge University Press, 2006).
- M J Sandel, The Case Against Perfection: Ethics in the Age of Genetic Engineering, 2nd ed, (Cambridge: Belknap Press of Harvard University Press ,2009).
- A Royer, The Council of Europe, (Strasbourg: Council of Europe, 2010).
- I Kant, Foundations of the Metaphysics of Morals, (Indianapolis: Bobbs-Merill, 1959) at 73
- S Negri, Self-Determination, Dignity and End-of-Life Care: Regulating Advance Directives in International and Comparative Perspective (Leiden: Martinus Nijhoff 2012).
- E J Wilson, P H Reill, Encyclopedia Of The Enlightenment: Facts on File Library of World History, 2nd ed (New-York:Infobase Publishing, 2004). 139
- A Wood, Kant's Ethical Thought, (Cambridge: Cambridge University Press, 1999).
- H Spiegelberg in eds. R Gotesky & E Laszlo, Human Dignity: A Challenge to Contemporary Philosophy. In: Human Dignity. This Century and the Next, ( New York: Gordon and Breach, 1970.
- C R Sunstien, Free Markets and Social Justice (New York: Oxford University Press, 1999).
- J Rachels, The Elements of Moral Philosophy, (New York: McGraw-Hill Higher Education, 2006). - L R Kass, Life, Liberty, and the Defense of Dignity: The Challenge for Bioethics (San Francisco: Encounter Books, 2002).
- P Guyar, Kant's Groundwork of the Metaphysics of Morals: Critical Essays (Lanham: Rowman & Littlefield, 1998).
- D Farrow, Ethics,Key Concepts in Philosophy, (Cornwall: MPG books, 2005).
- T Mappes & D DeGrazia, D ,Biomedical Ethics, (New York: McGraw-Hill. 1996) .
- R R Faden, T L. Beauchamp, N M. P. King, A History and Theory of Informed Consent, (Oxford: Oxford University Press, 1986).
- D M Brochert, Encyclopedia of Philosophy Supplement, (New-York:Simon & Schuster MacMillian, 1998).
- T Hobbes, Leviathan (Calgary: Broadview, 2011).
- R Nozick, Anarchy, State and Utopia, (New York: Basic Books, 1974).
- L R Kass, Life, Liberty, and the Defense of Dignity: The Challenge for Bioethics (San Francisco: Encounter Books, 2002).
- B McKibben, Enough: Staying Human in an Engineered Age (New York: Times Books 2003).
- M J Radin, Contested Commodities: The Trouble with Trade in Sex, Children, Body Parts, and Other Things (Cambridge, MA: Harvard University Press, 1996).
- L Hagger, The Child As Vulnerable Patient: Protection and Empowerment, (Cornwall: Ashgate, 2009). - J Burley,. The Genetic Revolution and Human Rights (New-York:Oxford University Press, 1999). - G Stock, Redesigning Humans: Our Inevitable Genetic Future, (New York: Houghton Mifflin, 2002). 140
- Plato, The Republic, Book I (New York: Basic Books, 1991). - J E J Rasko, G O'Sullivan & Rachel A. Ankeny, The Ethics of Inheritable Genetic Modification: A Dividing Line? (Cambridge UK: Cambridge University Press, 2006). - F Galton, Inquiries Into Human Faculty And Its Development, 2d. ed. (London: Everyman’s Library: Science 1943). - D J Kevles, In the Name of Eugenics: Genetics and the Uses of Human Heredity (Berkeley: University of California Press, 1985) . - Polyester Thought, The Bermuda Triangle of the Pot Calling the Kettle Black, online:
- M Ridley, Nature via Nurture: Genes, experience and what makes us human,(New-York: HarperCollins Publishers, 201)1 at 5. - H W Baillie & T K Casey, Is Human Nature Obsolete?: Genetics, Bioengineering, and the Future of the Human Condition(Cambridge MA: MIT Press, 2005). - L M Silver, Remaking Eden: How Genetic Engineering and Cloning Will Transform the American Family (New York, HarperCollins, 2007). - F Fokuyama, Our Posthuman Future: Consequences of the Biotechnology Revolution (New York: Macmillan 2003). - H Jonas. Technology, Medicine and Ethics(Frankfurt : Suhrkamp.1985). - F Norio & M, D R.J., Bioethics in Asia, (Christchurch: Eubios Ethics Institute, 1998). - J Gunning & S Holm ,Ethics, Law, and Society Volume.2 (London: Ashgate Publishing, Ltd, 2005) . - J Rawls, A Theory of Justice, (Cambridge, Harvard University Press 1971). - M Mehlman & J Botkin, Access to the Genome: The Challenge to Equality, (Georgetown University Press, Washington, DC, 1998)