This article was downloaded by: [New York University] On: 07 June 2015, At: 21:28 Publisher: Routledge Informa Ltd Registered in England and Wales Registered Number: 1072954 Registered office: Mortimer House, 37-41 Mortimer Street, London W1T 3JH, UK
The American Journal of Bioethics Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uajb20
The Diversity of Genetic Perfection a
b
Heidi Mertes & Kristien Hens a
Ghent University
b
KU Leuven Published online: 01 Jun 2015.
Click for updates To cite this article: Heidi Mertes & Kristien Hens (2015) The Diversity of Genetic Perfection, The American Journal of Bioethics, 15:6, 34-36, DOI: 10.1080/15265161.2015.1028664 To link to this article: http://dx.doi.org/10.1080/15265161.2015.1028664
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
Downloaded by [New York University] at 21:28 07 June 2015
The American Journal of Bioethics
rather than passive procreation, would necessarily seem to create a greater degree of culpability. Additionally, this cause of action would carry a high burden of proof, necessitating that the affected child show a high degree of likelihood that his or her parents were knowingly acting improperly when they selected a particular embryo with a negative trait, protecting most parents from the fear that any selection they make could potentially lead to this type of suit later in life. The metes and bounds of recoverable damages would have to be crafted such that the courts do not create value judgments on the general lives of the disabled and/or sanctioning eugenics. For example, damages could be limited to the actual damages associated with the cost of care, but not emotional damages that might necessitate that the court makes a value judgment that a particular disability always necessarily results in a damaged life (Stein 2010). Moreover, clinical personal at PGD clinics would be incentivized to maintain accurate records and provide necessary counseling, either for or against an action, as they could be included within this cause of action. Returning to Gattaca, in the film, parents were faulted for failing to use PGD. However, even as we argue for regulation to protect children from the potential negative implications of PGD, we have to recognize current limitations of science and the technologies. Courts need to make sure that we don’t get ahead of ourselves, and in the course of working to put constraints on the use of PGD, that we don’t inadvertently create a positive duty on parents to use assisted reproduction to prevent disease. As Gattaca and The Perfect 46 suggest, we will quickly reach an undesired dystopian future if we put too much reliance on these technologies too soon. &
REFERENCES Appel, J. M. 2011. Genetic screenings and child abuse: Can PGS rise to the level of criminality. UMKC Law Review 80: 373. Baruch, S., D. Kaufman, and K. L. Hudson. 2008.Genetic testing of embryos: Practices and perspectives of US in vitro fertilization clinics. Fertility and Sterility 89(5): 1053–1058. http://dx.doi.org/ 10.1016/j.fertnstert.2007.05.048 Eisenstadt v. Baird. 1972. 405 U.S. 438. Human Fertilization and Embryology Act. 2008. x14(4). Available at: http://www.legislation.gov.uk/ukpga/2008/22/contents Jellinek, M. A. 1999. Disease prevention and the genetic revolution: Defining a parental right to protect the bodily integrity of future children. Hastings Constitutional Law Quarterly 27: 369. Johnson, V. R., and C. G. Hargrove. 2006. Tort duty of parents to protect minor children, the. Village Law Review 51: 311. Kurchak, S. 2015. I’m m autistic, and believe me, it’s a lot better than measles. Available at: https://medium.com/the-archipel ago/im-autistic-and-believe-me-its-a-lot-better-than-measles78cb039f4bea Robertson, J. A. 2003. Extending preimplantation genetic diagnosis: Medical and non-medical uses. Journal of Medical Ethics 29(4): 213–216. http://dx.doi.org/10.1136/jme.29.4.213 Sparrow, R. 2015. Imposing genetic diversity. American Journal of Bioethics 15(6): 2–10. Stein, J. T. 2010. Backdoor eugenics: The troubling implications of certain damages awards in wrongful birth and wrongful life claims. Seton Hall Law Review 40: 1117. Vermette, R. 2014. A case for an exception in the domain of parental autonomy with testing for Huntington disease. Michigan State Journal of Medicine & Law 18: 29–161.
The Diversity of Genetic Perfection Heidi Mertes, Ghent University Kristien Hens, KU Leuven In response to both disability advocates and advocates of so-called “new eugenics,” Rob Sparrow (2015) argues that it is difficult to maintain that (genetic) diversity is a valuable good that ought to be preserved. His argument is largely based on the idea that imposing such diversity would always be at the expense of those people who—in this spectrum of diversity—are worst off. Even if diversity would increase overall or average happiness or well-being, it is unjust that genetic scapegoats would be sacrificed to obtain this social good. We agree with Sparrow’s conclusion that neither the claim that genetic diversity would be
inherently valuable nor the claim that it would be instrumentally valuable is convincing enough to plead for the deliberate conservation of disabilities. However, we disagree with the conclusion that the new eugenic logic would ultimately lead to “a world of striking uniformity.” A large part of Sparrow’s reasoning is based on the possibility of determining which genome is “the” best genome. There are a number of problems with this account. First of all, it is scientifically unrealistic. A number of publications have demonstrated that even for severe Mendelian diseases, we currently lack the knowledge to predict which
Address correspondence to Heidi Mertes, Bioethics Institute Ghent, Ghent University, Blandijnberg 2, Ghent, 9000, Belgium. E-mail: [email protected]
34 ajob
June, Volume 15, Number 6, 2015
Downloaded by [New York University] at 21:28 07 June 2015
Imposing Genetic Diversity
genotype will lead to which phenotype (Winand et al. 2014). Moreover, the emerging field of epigenetics demonstrates that the contribution of genes to the phenotype may be far less than traditionally assumed and environmental influences determining gene expression may be too complex to ever be in our control (Hens et al. 2013). Also, many genetic combinations will have both benefits and disadvantages. There is no “intelligence gene” or “beauty gene,” but rather there are often many genes contributing to one specific characteristic, and a single gene can in turn affect multiple characteristics. These observations do not necessarily undercut Sparrow’s argument though, as he merely requires that we select the best of all possible genomes to the best of our knowledge, which we could do even if they were all necessarily suboptimal. A second problem with this idea of selecting “the” best genome, however, is that it is a profoundly relative notion: relative to people’s personal opinions and experiences, and relative to the context. In response to the first, Sparrow concedes that there “may be reasonable disagreement amongst parents as to what counts as the ‘best’ genome” (3), yet believes that parental choices will necessarily converge as long as they keep in mind that they are required to do what is best for their child, rather than what they think is best (Sparrow 2015). This is, however, a difficult exercise, as can be illustrated with the example of autism. Autism is a multifactorial condition, for which contributing genes are constantly being identified (Freitag et al. 2010). Today it is still unknown how genes contribute to the phenotype: The same genetic variation can lead to an individual with mental retardation or to a high-functioning individual who may be socially challenged, but with superior systematizing capabilities. The debate between representatives of the autism rights movement and some parents of autistic children demonstrates that what may be seen as a disability to be cured by one party is considered a valuable part of someone’s identity by the other party (Baker 2006; Baron-Cohen 2000). Moreover, as autism rights advocates state, whether and to which extent certain forms of autism are a disability may depend on how society is organized and which support is available. Indeed, how to establish what is best remains a mystery, especially when taking into account the following argument about the constant variability of the best genome. Sparrow has acknowledged in this and in earlier work that the best genome will be different in different contexts, but seems to limit this observation mostly to different geographical locations (Sparrow 2011). What is missing from his analysis is the fact that the optimal genome is constantly changing even if one remains at the same location. Especially if people with the same genome were to be produced on a massive scale, as Sparrow envisages, the best will become average and thus those who manage to raise the bar yet a little more will stand out and benefit. Also, game theory predicts that if large number of similar “perfect” people were to be created, it would soon be better not to resemble them but to possess complementary characteristics and abilities. To use a caricature: In a world
June, Volume 15, Number 6, 2015
full of blond-haired, blue-eyed medical doctors who can finish a marathon in less than 2 hours and discover the theory of everything while doing so (perfect type A), it might be better to be Mediterranean-looking, muscled, technically schooled, and into languages rather than physics (perfect type B). Contrary to Sparrow’s assumptions, neither of these two prototypes can be said to be worse off to serve some greater good for society. Both are equally “blessed” yet very different. To come back to the example of autism, in a world full of socially fluent people, the odd one out who prefers to spend her Saturday nights writing Java code may eventually be more successful. The perfect genome is thus not in conflict with diversity, but quite the contrary; it is necessarily varied and constantly variable. In fact, if we want to prevent a constant shifting of the perfect traits in the new eugenic world, the best strategy would be to start out with a balanced diversity of perfect types A and B (and C, D, E, . . .) from the onset. The next question, then, is whether or not the resulting “perfect diversity” would include disabilities. For sure, disabilities would be reduced dramatically. This does not imply that people with disabilities are less valuable, merely that they are faced with reduced abilities (and thus less freedom), which limits their physical and social functioning. Thus, we would expect all kinds of perfect people to have both arms and legs and we would expect none of their senses (sight, hearing, smell, . . .) to be impaired. However, there are also more complex conditions that offer both advantages and disadvantages. We have mentioned autism as an example of how a condition may be considered either a disability or a difference, depending not only on the severity of the phenotype but also on the different viewpoints of those who live it and the bystanders or caregivers. Whether or not such conditions are to be considered as disabilities, as mere differences that do not necessarily impact on anybody’s wellbeing (both of the person herself and of others), or as enhancements is often debatable and very dependent on the circumstances in which someone ends up. These types of conditions may in fact still be represented in the perfect diversity. & REFERENCES Baker, D. L. 2006. Neurodiversity, neurological disability and the public sector: Notes on the autism spectrum. Disability & Society 21(1): 15–29. Baron-Cohen, S. 2000. Is Asperger syndrome/high-functioning autism necessarily a disability? Development and Psychopathology 12 (03): 489–500. Freitag, C. M., W. Staal, S. M. Klauck, E. Duketis, and R. Waltes. 2010. Genetics of autistic disorders: Review and clinical implications. European Child & Adolescent Psychiatry 19(3): 169–178. Hens, K., W. Dondorp, A. H. Handyside, J. Harper, A. J. Newson, G. Pennings, C. Rehmann-Sutter, and G. de Wert. 2013. Dynamics and ethics of comprehensive preimplantation genetic testing: A review of the challenges. Human Reproduction Update 19(August): 366–375.
ajob 35
The American Journal of Bioethics
Sparrow, R. 2011. A not-so-new eugenics. Harris and Savulescu on human enhancement. Hastings Center Report 41(1): 32–42. Sparrow, R. 2015. Imposing genetic diversity. American Journal of Bioethics 15(6): 2–10.
Winand, R., K. Hens, W. Dondorp, G. de Wert, Y. Moreau, J. R. Vermeesch, I. Liebaers, and J. Aerts. 2014. In vitro screening of embryos by whole-genome sequencing: Now, in the future or never? Human Reproduction 29(4): 842–851.
Promoting Individual Well-Being, Increasing Social Welfare, and Securing Genetic Diversity Simultaneously: It Is a Matter of Degree Downloaded by [New York University] at 21:28 07 June 2015
Karsten Weber, Brandenburg University of Technology In his remarkable article “Imposing Genetic Diversity” (2015) the author Robert Sparrow, by using several thought experiments to support his arguments, claims that with regard to human beings it is only possible to either impose genetic diversity within a human population or to increase social welfare in the same population as well as to promote individual well-being, but that it is not feasible to achieve all objectives simultaneously. Sparrow therefore draws the conclusion that for the sake of social welfare as well as individual well-being the aim of genetic diversity should be abandoned. If it were actually true that only one of those aims could be obtained, I would certainly join Sparrow in his decision in favor of social welfare and individual wellbeing. But I would like to claim that Sparrow’s conclusion is wrong since it rests (1) on a too far-reaching implicit definition of genetic diversity and (2) of what makes a genome the best one possible, as well as (3) on implicit assumptions about what counts for social welfare. Given that my arguments against Sparrow’s are correct, it is plausible to claim that we are able to promote individual well-being, to increase social welfare, and to secure genetic diversity simultaneously as long as we do not strive for the maximization of one of these goods. Genetic enhancement might reduce genetic diversity, but only to a certain and widely agreeable degree, and at the same time might increase individual well-being and social welfare. Before a more explicit version of my own line of argumentation can be presented, it is necessary to say something about the often-used word “we.” It is difficult to see who is meant when Sparrow uses this personal pronoun describing either Rosemarie Garland-Thomson’s position, his own, or the position of other scholars. The thought
experiments Sparrow introduces suggest that “we” refers to humankind, but given the diverse and often contradictory moral and religious assumptions in different societies and cultures, at least currently it is highly implausible to assume that in the future, humankind as a whole will make decisions concerning the preservation of genetic diversity and/or the legitimacy of genetic enhancement. Yet if thought experiments actually can prove anything or at least can draw some conclusions that are more plausible than others—and there are quite a lot of arguments to deny that—then they only can do that if the presumptions in such thought experiments show some verisimilitude. Otherwise, thought experiments degenerate into something like mere storytelling, comparable to science fiction or fantasy literature. But if one assumes that “we” refers to a particular existing society, most likely the society the respective author lives in, this would imply that the accepted notions (if anything like that ever really existed) of disability, enhancement, genetic diversity, social welfare, and individual well-being probably would widely differ from the respective notions in other societies. In this case, however, it does not make sense to argue either for genetic diversity or for social welfare and individual wellbeing as being contradictory. Since both understandings of the personal pronoun “we” cause valid objections, but only the notion of “we” in the sense of “humankind” supports a universalistic argumentation concerning the issues at stake, I use it in the other sense. This being said, I shall now elaborate my own arguments. In terms of argument 1, apparently Robert Sparrow accepts Rosemarie Garland-Thomson’s notion of genetic diversity. Although throughout his text no explicit definition of genetic diversity is given, it is reasonable to assume
Address correspondence to Karsten Weber, Chair for General Science of Technology, Faculty 1, Mathematics, Natural Sciences and Computer Science, Brandenburg University of Technology Cottbus, Senftenberg, PO Box 101344, D-03013 Cottbus, Germany. E-mail: Karsten. [email protected]
36 ajob
June, Volume 15, Number 6, 2015
The American Journal of Bioethics Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/uajb20
The Diversity of Genetic Perfection a
b
Heidi Mertes & Kristien Hens a
Ghent University
b
KU Leuven Published online: 01 Jun 2015.
Click for updates To cite this article: Heidi Mertes & Kristien Hens (2015) The Diversity of Genetic Perfection, The American Journal of Bioethics, 15:6, 34-36, DOI: 10.1080/15265161.2015.1028664 To link to this article: http://dx.doi.org/10.1080/15265161.2015.1028664
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms & Conditions of access and use can be found at http:// www.tandfonline.com/page/terms-and-conditions
Downloaded by [New York University] at 21:28 07 June 2015
The American Journal of Bioethics
rather than passive procreation, would necessarily seem to create a greater degree of culpability. Additionally, this cause of action would carry a high burden of proof, necessitating that the affected child show a high degree of likelihood that his or her parents were knowingly acting improperly when they selected a particular embryo with a negative trait, protecting most parents from the fear that any selection they make could potentially lead to this type of suit later in life. The metes and bounds of recoverable damages would have to be crafted such that the courts do not create value judgments on the general lives of the disabled and/or sanctioning eugenics. For example, damages could be limited to the actual damages associated with the cost of care, but not emotional damages that might necessitate that the court makes a value judgment that a particular disability always necessarily results in a damaged life (Stein 2010). Moreover, clinical personal at PGD clinics would be incentivized to maintain accurate records and provide necessary counseling, either for or against an action, as they could be included within this cause of action. Returning to Gattaca, in the film, parents were faulted for failing to use PGD. However, even as we argue for regulation to protect children from the potential negative implications of PGD, we have to recognize current limitations of science and the technologies. Courts need to make sure that we don’t get ahead of ourselves, and in the course of working to put constraints on the use of PGD, that we don’t inadvertently create a positive duty on parents to use assisted reproduction to prevent disease. As Gattaca and The Perfect 46 suggest, we will quickly reach an undesired dystopian future if we put too much reliance on these technologies too soon. &
REFERENCES Appel, J. M. 2011. Genetic screenings and child abuse: Can PGS rise to the level of criminality. UMKC Law Review 80: 373. Baruch, S., D. Kaufman, and K. L. Hudson. 2008.Genetic testing of embryos: Practices and perspectives of US in vitro fertilization clinics. Fertility and Sterility 89(5): 1053–1058. http://dx.doi.org/ 10.1016/j.fertnstert.2007.05.048 Eisenstadt v. Baird. 1972. 405 U.S. 438. Human Fertilization and Embryology Act. 2008. x14(4). Available at: http://www.legislation.gov.uk/ukpga/2008/22/contents Jellinek, M. A. 1999. Disease prevention and the genetic revolution: Defining a parental right to protect the bodily integrity of future children. Hastings Constitutional Law Quarterly 27: 369. Johnson, V. R., and C. G. Hargrove. 2006. Tort duty of parents to protect minor children, the. Village Law Review 51: 311. Kurchak, S. 2015. I’m m autistic, and believe me, it’s a lot better than measles. Available at: https://medium.com/the-archipel ago/im-autistic-and-believe-me-its-a-lot-better-than-measles78cb039f4bea Robertson, J. A. 2003. Extending preimplantation genetic diagnosis: Medical and non-medical uses. Journal of Medical Ethics 29(4): 213–216. http://dx.doi.org/10.1136/jme.29.4.213 Sparrow, R. 2015. Imposing genetic diversity. American Journal of Bioethics 15(6): 2–10. Stein, J. T. 2010. Backdoor eugenics: The troubling implications of certain damages awards in wrongful birth and wrongful life claims. Seton Hall Law Review 40: 1117. Vermette, R. 2014. A case for an exception in the domain of parental autonomy with testing for Huntington disease. Michigan State Journal of Medicine & Law 18: 29–161.
The Diversity of Genetic Perfection Heidi Mertes, Ghent University Kristien Hens, KU Leuven In response to both disability advocates and advocates of so-called “new eugenics,” Rob Sparrow (2015) argues that it is difficult to maintain that (genetic) diversity is a valuable good that ought to be preserved. His argument is largely based on the idea that imposing such diversity would always be at the expense of those people who—in this spectrum of diversity—are worst off. Even if diversity would increase overall or average happiness or well-being, it is unjust that genetic scapegoats would be sacrificed to obtain this social good. We agree with Sparrow’s conclusion that neither the claim that genetic diversity would be
inherently valuable nor the claim that it would be instrumentally valuable is convincing enough to plead for the deliberate conservation of disabilities. However, we disagree with the conclusion that the new eugenic logic would ultimately lead to “a world of striking uniformity.” A large part of Sparrow’s reasoning is based on the possibility of determining which genome is “the” best genome. There are a number of problems with this account. First of all, it is scientifically unrealistic. A number of publications have demonstrated that even for severe Mendelian diseases, we currently lack the knowledge to predict which
Address correspondence to Heidi Mertes, Bioethics Institute Ghent, Ghent University, Blandijnberg 2, Ghent, 9000, Belgium. E-mail: [email protected]
34 ajob
June, Volume 15, Number 6, 2015
Downloaded by [New York University] at 21:28 07 June 2015
Imposing Genetic Diversity
genotype will lead to which phenotype (Winand et al. 2014). Moreover, the emerging field of epigenetics demonstrates that the contribution of genes to the phenotype may be far less than traditionally assumed and environmental influences determining gene expression may be too complex to ever be in our control (Hens et al. 2013). Also, many genetic combinations will have both benefits and disadvantages. There is no “intelligence gene” or “beauty gene,” but rather there are often many genes contributing to one specific characteristic, and a single gene can in turn affect multiple characteristics. These observations do not necessarily undercut Sparrow’s argument though, as he merely requires that we select the best of all possible genomes to the best of our knowledge, which we could do even if they were all necessarily suboptimal. A second problem with this idea of selecting “the” best genome, however, is that it is a profoundly relative notion: relative to people’s personal opinions and experiences, and relative to the context. In response to the first, Sparrow concedes that there “may be reasonable disagreement amongst parents as to what counts as the ‘best’ genome” (3), yet believes that parental choices will necessarily converge as long as they keep in mind that they are required to do what is best for their child, rather than what they think is best (Sparrow 2015). This is, however, a difficult exercise, as can be illustrated with the example of autism. Autism is a multifactorial condition, for which contributing genes are constantly being identified (Freitag et al. 2010). Today it is still unknown how genes contribute to the phenotype: The same genetic variation can lead to an individual with mental retardation or to a high-functioning individual who may be socially challenged, but with superior systematizing capabilities. The debate between representatives of the autism rights movement and some parents of autistic children demonstrates that what may be seen as a disability to be cured by one party is considered a valuable part of someone’s identity by the other party (Baker 2006; Baron-Cohen 2000). Moreover, as autism rights advocates state, whether and to which extent certain forms of autism are a disability may depend on how society is organized and which support is available. Indeed, how to establish what is best remains a mystery, especially when taking into account the following argument about the constant variability of the best genome. Sparrow has acknowledged in this and in earlier work that the best genome will be different in different contexts, but seems to limit this observation mostly to different geographical locations (Sparrow 2011). What is missing from his analysis is the fact that the optimal genome is constantly changing even if one remains at the same location. Especially if people with the same genome were to be produced on a massive scale, as Sparrow envisages, the best will become average and thus those who manage to raise the bar yet a little more will stand out and benefit. Also, game theory predicts that if large number of similar “perfect” people were to be created, it would soon be better not to resemble them but to possess complementary characteristics and abilities. To use a caricature: In a world
June, Volume 15, Number 6, 2015
full of blond-haired, blue-eyed medical doctors who can finish a marathon in less than 2 hours and discover the theory of everything while doing so (perfect type A), it might be better to be Mediterranean-looking, muscled, technically schooled, and into languages rather than physics (perfect type B). Contrary to Sparrow’s assumptions, neither of these two prototypes can be said to be worse off to serve some greater good for society. Both are equally “blessed” yet very different. To come back to the example of autism, in a world full of socially fluent people, the odd one out who prefers to spend her Saturday nights writing Java code may eventually be more successful. The perfect genome is thus not in conflict with diversity, but quite the contrary; it is necessarily varied and constantly variable. In fact, if we want to prevent a constant shifting of the perfect traits in the new eugenic world, the best strategy would be to start out with a balanced diversity of perfect types A and B (and C, D, E, . . .) from the onset. The next question, then, is whether or not the resulting “perfect diversity” would include disabilities. For sure, disabilities would be reduced dramatically. This does not imply that people with disabilities are less valuable, merely that they are faced with reduced abilities (and thus less freedom), which limits their physical and social functioning. Thus, we would expect all kinds of perfect people to have both arms and legs and we would expect none of their senses (sight, hearing, smell, . . .) to be impaired. However, there are also more complex conditions that offer both advantages and disadvantages. We have mentioned autism as an example of how a condition may be considered either a disability or a difference, depending not only on the severity of the phenotype but also on the different viewpoints of those who live it and the bystanders or caregivers. Whether or not such conditions are to be considered as disabilities, as mere differences that do not necessarily impact on anybody’s wellbeing (both of the person herself and of others), or as enhancements is often debatable and very dependent on the circumstances in which someone ends up. These types of conditions may in fact still be represented in the perfect diversity. & REFERENCES Baker, D. L. 2006. Neurodiversity, neurological disability and the public sector: Notes on the autism spectrum. Disability & Society 21(1): 15–29. Baron-Cohen, S. 2000. Is Asperger syndrome/high-functioning autism necessarily a disability? Development and Psychopathology 12 (03): 489–500. Freitag, C. M., W. Staal, S. M. Klauck, E. Duketis, and R. Waltes. 2010. Genetics of autistic disorders: Review and clinical implications. European Child & Adolescent Psychiatry 19(3): 169–178. Hens, K., W. Dondorp, A. H. Handyside, J. Harper, A. J. Newson, G. Pennings, C. Rehmann-Sutter, and G. de Wert. 2013. Dynamics and ethics of comprehensive preimplantation genetic testing: A review of the challenges. Human Reproduction Update 19(August): 366–375.
ajob 35
The American Journal of Bioethics
Sparrow, R. 2011. A not-so-new eugenics. Harris and Savulescu on human enhancement. Hastings Center Report 41(1): 32–42. Sparrow, R. 2015. Imposing genetic diversity. American Journal of Bioethics 15(6): 2–10.
Winand, R., K. Hens, W. Dondorp, G. de Wert, Y. Moreau, J. R. Vermeesch, I. Liebaers, and J. Aerts. 2014. In vitro screening of embryos by whole-genome sequencing: Now, in the future or never? Human Reproduction 29(4): 842–851.
Promoting Individual Well-Being, Increasing Social Welfare, and Securing Genetic Diversity Simultaneously: It Is a Matter of Degree Downloaded by [New York University] at 21:28 07 June 2015
Karsten Weber, Brandenburg University of Technology In his remarkable article “Imposing Genetic Diversity” (2015) the author Robert Sparrow, by using several thought experiments to support his arguments, claims that with regard to human beings it is only possible to either impose genetic diversity within a human population or to increase social welfare in the same population as well as to promote individual well-being, but that it is not feasible to achieve all objectives simultaneously. Sparrow therefore draws the conclusion that for the sake of social welfare as well as individual well-being the aim of genetic diversity should be abandoned. If it were actually true that only one of those aims could be obtained, I would certainly join Sparrow in his decision in favor of social welfare and individual wellbeing. But I would like to claim that Sparrow’s conclusion is wrong since it rests (1) on a too far-reaching implicit definition of genetic diversity and (2) of what makes a genome the best one possible, as well as (3) on implicit assumptions about what counts for social welfare. Given that my arguments against Sparrow’s are correct, it is plausible to claim that we are able to promote individual well-being, to increase social welfare, and to secure genetic diversity simultaneously as long as we do not strive for the maximization of one of these goods. Genetic enhancement might reduce genetic diversity, but only to a certain and widely agreeable degree, and at the same time might increase individual well-being and social welfare. Before a more explicit version of my own line of argumentation can be presented, it is necessary to say something about the often-used word “we.” It is difficult to see who is meant when Sparrow uses this personal pronoun describing either Rosemarie Garland-Thomson’s position, his own, or the position of other scholars. The thought
experiments Sparrow introduces suggest that “we” refers to humankind, but given the diverse and often contradictory moral and religious assumptions in different societies and cultures, at least currently it is highly implausible to assume that in the future, humankind as a whole will make decisions concerning the preservation of genetic diversity and/or the legitimacy of genetic enhancement. Yet if thought experiments actually can prove anything or at least can draw some conclusions that are more plausible than others—and there are quite a lot of arguments to deny that—then they only can do that if the presumptions in such thought experiments show some verisimilitude. Otherwise, thought experiments degenerate into something like mere storytelling, comparable to science fiction or fantasy literature. But if one assumes that “we” refers to a particular existing society, most likely the society the respective author lives in, this would imply that the accepted notions (if anything like that ever really existed) of disability, enhancement, genetic diversity, social welfare, and individual well-being probably would widely differ from the respective notions in other societies. In this case, however, it does not make sense to argue either for genetic diversity or for social welfare and individual wellbeing as being contradictory. Since both understandings of the personal pronoun “we” cause valid objections, but only the notion of “we” in the sense of “humankind” supports a universalistic argumentation concerning the issues at stake, I use it in the other sense. This being said, I shall now elaborate my own arguments. In terms of argument 1, apparently Robert Sparrow accepts Rosemarie Garland-Thomson’s notion of genetic diversity. Although throughout his text no explicit definition of genetic diversity is given, it is reasonable to assume
Address correspondence to Karsten Weber, Chair for General Science of Technology, Faculty 1, Mathematics, Natural Sciences and Computer Science, Brandenburg University of Technology Cottbus, Senftenberg, PO Box 101344, D-03013 Cottbus, Germany. E-mail: Karsten. [email protected]
36 ajob
June, Volume 15, Number 6, 2015
