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Genetics, Justice and Future Generations

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Genetics, Justice and Future Generations GENETICS, JUSTICE AND FUTURE GENERATIONS by Ioana Petre Submitted to Central European University Department of Political Science In partial fulfillment of the requirements for the degree of Doctor of Philosophy Supervisor: Zoltan Miklosi Budapest, Hungary 2015 Copyright notice This dissertation contains no material accepted for any other degree(s) at any other institution(s). This dissertation contains no material written and/or published by any other person, except for where appropriate acknowledgment has been made in the form of bibliographical reference. i Abstract How does the distribution of genetic technologies within the current generation influence the potential interests and well-being of future generations? This is the main inquiry of my thesis, which, in order to be adequately answered, is accompanied by a myriad of subsequent questions, such as: (i) who are the future generations?; which types of genetic procedures are, in themselves, morally problematic?; (iii) which types of genetic procedures are morally problematic for the generations to come?; (iv) how can these latter genetic technologies affect future generations?; (v) how can these latter genetic technologies affect the social environment in which the future generations will live? I argue that future generations constitute only a subtype of the large category of future people and I provide a set of characteristics that could help us define them. I claim that germline interventions aimed at modifying the genomes of future people cannot be morally justifiable if there is no possibility of controlling the intervention either by reversing or altering it, whenever need demands it. Performing germline modifications on currently living individuals targets future generations’ health and the well-being associated to it by reducing the diversity of the human gene pool. I provide a definition of enhancement that does not only capture the core of the concept itself, but it also distinguishes it from treatment and prevention. I identify four main areas in which genetic enhancement may come to influence the lives of the future people: (i) collective action problems; (ii) impact on global risks; (iii) utopic singularity; (iv) social configuration. As far as social justice is concerned, I propose allocating enhancing vouchers to all the members of a society, including children and the yet unborn. By looking at the effects of individual enhancements on the larger ii social group, I recommend the subsidization of those procedures that bring the greatest collective gains. I emphasize the importance of the environment as a precursor for the materialization of the goals of genetic enhancements. Finally, I argue that epigenetics and one’s lifestyle do not constitute adequate topics for a theory of justice - distributive or intergenerational -, but they do represent a fertile ground for ethical scrutiny. iii Acknowledgements I am extremely grateful to my supervisor, Zoltan Miklosi, for his support, guidance, attentive reading of all my work and valuable feedback. I would like to thank Judit Sandor and Janos Kis for their insightful comments, for identifying the weak links in my arguments and for making this thesis better. I have gained a lot from my visit at the Center for Biomedical Ethics and Law at the University of Tokyo. I am indebted to the Center’s faculty and staff for their warm welcome and interest in the intersection of genetics, justice and future generations. I am very lucky to have had such a strong role model in terms of work ethics as Casey Tompkins and to benefit from the support of my dear friends and colleagues: Jelena Belic, Damir Cicic, Yuliya Kanygina, Tamara Kolaric, Anton Markoc, Elena Popa, Magdalena Tsankova, Yao Wang and Miklos Zala. iv TABLE OF CONTENTS INTRODUCTION 1 1. Review of the literature on future generations 2 2. Review of the literature on genetic justice 6 3. Contribution 11 4. Methodology 13 5. Structure 14 CHAPTER 1 CONCEPTUAL CLARIFICATION: FUTURE GENERATIONS AND GENETIC INTERVENTIONS 15 1. Future generations 16 2. Genetic interventions: clarification through classification 24 CHAPTER 2 GERMLINE INTERVENTIONS AND THEIR IMPLICATIONS FOR FUTURE GENERATIONS 28 1. Objection 1: safety 34 2. Objection 2: population versus individual focus 36 3. Objection 3: spontaneous mutations 37 4. Objection 4: exceptionalism 39 5. Objection 5: intentional pursuit of genetic diversity through germline engineering 43 6. Objection 6: harm reduction potential 44 CHAPTER 3 HUMAN ENHANCEMENT: DEFINITION, LIMITS AND CLASSIFICATION 46 1. What is human enhancement and where is it placed in the medical repertoire? 48 2. Normality in biology and the life sciences: Arguing in favor of the pure state account 60 3. Human enhancement and its classification 69 v CHAPTER 4 HUMAN ENHANCEMENT AND ITS CRITICS 78 1. The appeal to excellence 79 2. The relation of means to ends 81 3. The distortion of human normality 86 4. The violation and destruction of human nature 88 5. Hubris 100 6. Identity and authenticity 102 7. The misprioritization of resources 104 8. Increasing the already existing inequalities and possibly creating new ones 105 CHAPTER 5 FUTURE GENERATIONS AND GENETIC ENHANCEMENT 110 1. Future generations, genetic enhancement and collective action problems 120 2. Future generations, genetic enhancement and global risks 137 3. Future generations, genetic enhancement and utopic singularity 146 CHAPTER 6 FUTURE GENERATIONS, GENETIC ENHANCEMENT AND DISTRIBUTIVE JUSTICE 148 1. The micro-allocation problem 151 2. The macro-allocation problem 164 CONCLUSION 173 BIBLIOGRAPHY 178 vi LIST OF FIGURES Figure 1: The classification of genetic intervention 26 Figure 2: The demarcation between treatment, prevention and enhancement 51 vii INTRODUCTION I don’t see how he can ever finish, if he doesn’t begin. (L. Carroll) Genetic technologies raise numerous questions. Some of them are specifically addressed to scientists, others to social scientists and philosophers, while still others capture the interest of both groups. As the field is evolving at a rapid pace, the application and safety of genetic interventions, as well as their distribution and moral permissibility are put under increased scrutiny. The aim of this thesis is to explore the distributive component of genetic technologies among current generations and its consequences on future generations and their interests. Discussions of distribution will necessarily lead to considerations regarding application, safety and moral justification, as the latter are tightly connected to the issue of the currency or object of the distribution. The central question of my inquiry can be briefly formulated as follows: How does the distribution of genetic interventions among the present generation affect the interests of future generations? It basically represents a bridge that links together two independent, self-standing areas, each of them of great significance on its own: genetic justice, on the one hand, and the problem of future generations, on the other. I will situate my own research in the existing literature by providing a brief overview of these fields in the next two sections. Before that, however, I need to spell out the main assumption 1 behind this thesis: ‘there will still be a world five hundred years from now and […] it will contain human beings that are very much like us.’ 1 1. Review of the literature on future generations There are three types of future persons: fetuses, unborn individuals of a family line and future generations. As I will later show in the thesis, the concept of future generations should be strictly demarcated from the two other categories of future people, as they differ in terms of their identity, interests, moral and legal characteristics. Even if, in practice, the three may overlap, in theory, they are distinct. Unfortunately, many times the notion of future generations stands as an umbrella concept that gathers all other types of future individuals. Most discussions about future generations in philosophy, political theory and bioethics start from one basic assumption: everything we do or fail to do in the present has a consequence on what is going to happen in the future. This idea has been very well captured by Parfit and his Non- Identity Problem, which stresses the fact that current people can affect both the identity and the number of the individuals existing in the future. In spite of this complication that seems to deny the existence of any obligations toward the unborn, it is intuitively hard not to acknowledge the fact that there are connections between generations that give birth to benefits and burdens whose distribution is a matter of justice. Normative inquiries of intergenerational justice can be traced back to Rawls, who is the first moral philosopher to engage in a thorough discussion concerning the duties of present individuals toward the future. At the core of his conception lies the principle of just savings, according to which the duties that the current generation has toward the future ones is to provide them with ‘the 1 Joel Feinberg, “The Rights of Animals and Unborn Generations” in Philosophy and Environmental Crisis, edited by William T. Blackstone (Athens, GA: University of Georgia Press, 1974): 43. 2 conditions needed to establish and to preserve a just basic structure over time.’ 2 In order to achieve this, the individual in the original position is perceived as a head of family who does not take into account only his own well-being, but also that of his children and grandchildren. Rawls calls this condition ‘the motivational assumption’ and it rests on the idea that there is a natural motive that makes humans care for their offspring. 3 One of the problems with Rawls’s framework is that it does not apply to the future generations themselves, but to the unborn children of already existing families. His attempt is to ground the duties that each generation has toward the future in the duties that parents have toward their children. If every person had children, then it wouldn’t be logically impossible to safeguard the interests of the future generations by protecting those of offspring.
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