Technology and ethics 1 Technology and ethics Technology and ethics The human being through the lens of advances in genetics, biotechnology, and artificial intelligence Scientific cycle 2020-2023 Technology and ethics Table of Contents The human being through the lens of advances in genetics, biotechnology, and artificial intelligence................................................................................................. 1 1. Towards a “geneticization” of society?................................................................................................ 2 2. Using genetic engineering to manipulate living organisms.. 4 Shaping nature by means of gene drive engineering?......................... 4 Is human genome editing acceptable?............................................................................................... 5 How should human genome editing be regulated in Canada and worldwide?....................................................................................................................................................................................................... 6 3. The application of artificial intelligence in health care: A dehumanization of care?......................................................................................................................................................... 7 Conclusion................................................................................................................................................................................................................................................. 9 1 Technology and ethics Technology and ethics The human being through the lens of advances in genetics, biotechnology, and artificial intelligence Technology is a fundamental feature of the possible, this type of question has humanity. Its impact on our lives at the become increasingly important in today’s beginning of the 21st century seems societies. greater than ever. Our entry into the digital age has brought rapid and profound Aware of the major issues raised by changes and breakthroughs on many levels contemporary technologies, the Pierre in our individual and collective lives. At Elliott Trudeau Foundation will focus on the same time, major advances have been the theme of “Technology and ethics” in made over the past 30 years in the areas its cycle of leadership programs beginning of biotechnology and the life sciences, in 2020-2021. While these programs aim including, for example, genetically to train our Scholars to become engaged modified organisms, cloning, artificial leaders in their communities and around organs, assisted reproductive technology, the world, it is essential that these and technologies for sequencing and emerging leaders understand the ethical editing the human genome. These issues that are raised by contemporary developments bring new social challenges technologies and that they are equipped and confront us with ethical dilemmas. to face the challenges these technologies Technologies such as human genome pose. Our 2020 Scholars, Fellows, editing, for example, have the potential and Mentors will particularly focus on to cure serious diseases or save lives, but developments in biotechnology and on the could also lead to new forms of social incorporation of artificial intelligence into inequality and may have unforeseen health care. How is humanity shaped by negative consequences for humanity advances in these areas, and, in turn, how in the long term. How can inventions can we shape them on the basis of ethical such as these be managed to enable us principles? This is the core question that to take advantage of the benefits they will direct our scientific cycle, including our can bring while mitigating their risks? Institutes for Engaged Leadership in 2020- As technological advances seem to 2021. continually push back the boundaries of Technology and ethics 2 Technology and ethics This paper focuses on three areas of (such as athletic abilities) of a person technological application that will be based on their genetic analysis. For some examined in light of the issues referred to analysts, such as Timothy Caulfield, a above: genetic testing, human genome 2013 Fellow of the Pierre Elliott Trudeau editing, and the incorporation of artificial Foundation, these developments reflect intelligence into health care. the “massive emphasis” placed on genetics by society over the last twenty years.5 Towards a “geneticization” 1 of society? Other researchers echo this sentiment, criticizing the current trend towards Since the completion of the Human “geneticization,” or the tendency to focus Genome Project in 2003, which has given on the genetic determinants of our health us an understanding of the human genome or identity as individuals, to the detriment pattern, genome sequencing technologies of social, economic, and environmental have become more efficient and less factors that affect the human condition.6 expensive.1 It has therefore become easier Professor Kim Tallbear, a 2018 Fellow of to explore an individual’s genome and to the Pierre Elliott Trudeau Foundation, identify genes or sequences responsible expressed a similar perspective in for certain diseases.2 In recent years, her critical analysis of the concept of researchers have also become interested in “indigenous DNA” that is used in the study the complex relationships between human of the genetics of human populations and genes and the environment. They have in the genetic ancestry testing industry.7 focused on genes that may increase the Going against a biological conception of predisposition to certain diseases as well indigenous identity and the idea that it as looking at environmental and behavioral can be “proven” by a genetic test, she has conditions that could prevent such demonstrated that the composition of predispositions from being expressed.3 this identity is much more complex and involves social factors. In the wake of these scientific and technological developments, Western Moreover, one of the major ethical societies have witnessed the development issues raised by genetic testing – and of a market for genetic tests, including the collection of genetic information in over-the-counter tests. More than 30,000 general8 – is the confidentiality of the genetic tests are currently available.4 For information gathered. According to the a few hundred dollars, private companies Genetic Discrimination Observatory, “The offer tests that can paint a picture of the quality and scope of privacy policies risks of developing certain diseases and and security features of private DTC-GT inform consumers about their heredity. [Direct-to-consumer genetic testing] Some companies go beyond heredity companies’ genetic databases are highly and predisposition to disease, offering to variable and consumers are not always interpret the various potential capabilities informed of applicable limitations.”9 It 3 Technology and ethics can prove very difficult to maintain a syndrome has been offered to pregnant minimum level of control over your data women during the first trimester of and the way it will be used.10 And when pregnancy. Consisting of a simple maternal personal genetic data is shared with third blood test, this is a more reliable technique parties, such as insurance companies or that is safer for the fetus, and can be used employers, these third parties may treat earlier in pregnancy than the method the individual concerned differently on previously used for this type of genetic the basis of their genetic characteristics. screening. Some experts believe that these The typical scenario of this nature relates features, combined with the commercial to the possibility of an insurer using an interests backing the routinization of the individual’s genetic profile to calculate NIPT, may put more pressure on women, their insurability.11 How and to what extent who are left with the moral burden of can we mitigate the risks of genetic deciding whether or not to accept the discrimination, namely the “denial of rights, test, but are not always properly informed privileges, or opportunities on the basis about this decision by medical staff.14 of information obtained from genetically- Moreover, the number of conditions that based diagnostic and prognostic tests”?12 can be detected by the NIPT is continually Are the existing regulations sufficient? increasing, so that the test should soon be capable of offering a wide range of In Canada, the Act to Prohibit and Prevent genetic information about the fetus. It is Genetic Discrimination came into force important to consider whether the ability in May 2017. This law prohibits obliging a to obtain an increased amount of genetic person to undergo genetic testing or to information about a fetus is a positive report results of testing as a prerequisite development, from both individual and for the provision of goods and services. It societal perspectives. To what extent also amends the Canadian Human Rights should we protect the right of pregnant Act to prohibit discrimination based on women to choose not to be informed of a person’s genetic characteristics. In the likelihood that their fetus has atypical December 2018, however, the Court of genetic conditions? At the societal level, Appeal of Quebec ruled that the law was is it not possible that prenatal genetic invalid because it did not fall within federal screening encourages eugenics? jurisdiction.13 The Canadian Coalition for Genetic Fairness has lodged an appeal For some