Hostname: page-component-76fb5796d-vfjqv Total loading time: 0 Render date: 2024-04-29T22:21:49.334Z Has data issue: false hasContentIssue false
  • English
  • Français

FACE Facts: Why Human Genetics Will Always Provoke Bioethics

Published online by Cambridge University Press:  01 January 2021

Eric T. Juengst
Get access Rights & Permissions [Opens in a new window]

Extract

Over the last decade, more U.S. taxpayers money has been spent trying to anticipate and address the bioethical issues raised by advances in human genetics than any other set of issues in the field. Does this make sense? Not everyone in bioethics thinks so. Some think there are more important topics, like issues of health care justice, that will be neglected if the field continues to follow the money to dwell on the moral challenges of a relatively small community of research scientists. Others decry genetic exceptionalism as inappropriately singling out this scientific enterprise for criticism and regulation, when the same issues are faced even more acutely in other parts of the biomedical world. Human genetics is not accelerating as fast as pharmacology, for example, or as easy to abuse as virology, or as philosophically challenging as neurology.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 32 , Issue 2 , Summer 2004 , pp. 267 - 275
Copyright
Copyright © American Society of Law, Medicine and Ethics 2004

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Boyer, J., National Human Genome Research Institute, $140 million dollars since 1990. Personal Communication with author, March 24, 2004.Google Scholar
Zoloth, L., “Heroic Measures: Just Bioethics in an Unjust World,” The Hastings Center Report 31, no. 6 (2001): 34–40.CrossRefGoogle Scholar
Sutter, S., “The Allure and Peril of Genetic Exceptionalism: Do We Need Special Genetics Legislation?” Washington University Law Quarterly 79 (2001): 906–1002.Google Scholar
Hubbard, R. Wald, E., Exploding the Gene Myth (Boston: Beacon Press, 1993).Google Scholar
Callahan, D., “The Moral Career of Genetic Engineering,” Hastings Center Report 9, no. 2 (1978): 9–10.CrossRefGoogle Scholar
Allen, A., “Policing the Gene Machine: Can Anyone Control the Human Genome Project?” Linqua Franca 7, no. 3 (1997): 28–38.Google Scholar
Goldstein, D., “Statistics from ETHX Database,” National Reference Center for Bioethics Literature, Georgetown University, Personal Communication, July 16, 2003Google Scholar
Hood, L. Rowen, L., “Genes, Genomes and Society,” in Rothstein, M., ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven, CT: Yale Univiversity Press, 1997): 3–31.Google Scholar
Annas, G., “Privacy Rules for DNA Databanks: Protecting Coded ‘Future Diaries,’” JAMA 270 (1993): 2346–2350.CrossRefGoogle Scholar
Kevles, D. Hood, L., “Reflections,” in Kevles, D. Hood, L., eds., The Code of Codes: Scientific and Social Issues in the Human Genome Project(Cambridge: Harvard University Press, 1992): 300–331, at 304, at 34.Google Scholar
Andrews, L., Future Perfect: Confronting Decisions about Genetics (New York: Columbia University Press, 2001): at 31.CrossRefGoogle Scholar
Murray, T., “Genetic Exceptionalism and ‘Future Diaries’: Is Genetic Information Different from Other Medical Information?” in Rothstein, M., ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven, CT: Yale University Press, 1997): 60–77.Google Scholar
Alper, J., “Genetic Complexity in Human Disease and Behavior,” in Alper, J. Ard, C. Asch, A. Beckwith, J. Conrad, P. Geller, L., eds., The Double-Edged Helix: Social Implications of Genetics in a Diverse World (Baltimore: Johns Hopkins University Press, 2002): 17–39.Google Scholar
For a helpful review see Burke, W. Coughlin, S. Lee, N. Weed, D. Khoury, M., “Application of Population Screening Principles to Genetic Screening for Adult-onset Conditions,” Genetic Testing 5 (2001): 201–211.CrossRefGoogle Scholar
Holtzman, N., “Will Genetics Revolutionize Medicine?” New England Journal of Medicine 343 (2000): 141–144.CrossRefGoogle Scholar
Juengst, E., “The Ethics of Prediction: Genetic Risk and the Physician-Patient Relationship,” Genome Science and Technology 1, no. 1 (1995): 21–35.CrossRefGoogle Scholar
Buchanan, A., “An Ethical Framework for Biological Samples Policy,” in National Bioethics Advisory Commission, Research Involving Human Biological Materials: Ethical Issues and Policy Guidance Volume II: Commissioned Papers(Rockville, MD: U.S. Government Printing Office, 2000): B1–B31.Google Scholar
Condit, C., The Meanings of the Gene: Public Debates about Human Heredity (Madison: University of Wisconsin Press, 1999): 227.Google Scholar
Smith, D. Quaid, K. Dworkin, R. et al. , Early Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetics Diseases (Bloomington: Indiana University Press, 1998).Google Scholar
Nelkin, D. Lindee, S., The DNA Mystique: The Gene as a Cultural Icon (New York: W.H.Freeman, 1995).Google Scholar
Rothman, D. Rothman, S., The Pursuit of Perfection: The Promise and Peril of Medical Enhancement (New York: Pantheon Books, 2003).Google Scholar
McGee, G., Beyond Genetics: Putting the Power of DNA to Work in Your Life (New York: Harper and Row, 2003): 116.Google Scholar
The best collection of which is still Murray, T. Mehlman, M., eds., The Encyclopedia of Ethical, Legal and Policy Issues in Biotechnology (New York: John Wiley and Sons, 2000).Google Scholar
Parens, E. Asch, A., eds., Prenatal Testing and the Disability Critique (Washington DC: Georgetown University Press, 2000); Buchanan, A. Brock, D. Daniels, N. Wikler, D., From Chance to Choice: Genetics and Justice (Cambridge: Cambridge University Press, 2000); Chapman, A. Frankel, M., eds., Designing Our Descendants: The Promises and Perils of Genetic Modifications (Baltimore: Johns Hopkins University Press, 2004).Google Scholar
Sorenson, J. Botkin, J., eds., “Genetic Testing and the Family,” American Journal of Medical Genetics Part C: Seminars in Medical Genetics 119 C (2003): 1–78Google Scholar
Juengst, E., “Genetic Testing and Moral Dynamics of Family Life,” Public Understanding of Science 8, no. 3 (1999): 193–207.CrossRefGoogle Scholar
Porkorski, R., “Insurance Underwriting in the Genetic Era,” American Journal of Human Genetics 60 (1997): 205–216.Google Scholar
Parker, L. Lidz, C., “Familial Coercion to Participate in Genetic Family Studies: Is There a Cause for IRB Intervention?” IRB: A Review of Human Subjects Research 16 (1994): 6–12.CrossRefGoogle Scholar
Dugan, B. Weisner, G. Juengst, E. O’Riordan, M. Matthews, A. Robin, N., “Duty to Warn At-Risk Relatives for Genetic Disease: Genetic Counselors’ Clinical Experience,” American Journal of Medical Genetics 119C (2003): 27–34.CrossRefGoogle Scholar
White, M. T., “Making Responsible Decisions: An Interpretive Ethic for Genetic Decision-Making,” Hastings Center Report 29 (1999): 14–21.Google Scholar
Burgess, M. d’Agincourt-Canning, L., “Genetic Testing for Hereditary Disease: Attending to Relational Responsibility,” Journal of Clinical Ethics 12 (2001): 361–371.Google Scholar
Modell, J., Kinship with Strangers: Adoption and Interpretations of Kinship in American Culture (Berkeley: University of California Press, 1994).Google Scholar
Davis, D., “Groups, Communities and Contested Identities in Genetic Research,” Hastings Center Reports (2000): 38–45.CrossRefGoogle Scholar
Tallbear, K., “DNA, Blood and Racializing the Tribe,” Wicazo SA Review 17 (2002): 2–19; Elliott, C. Brodwin, P., “Identity and Genetic Ancestry Tracing,” British Medical Journal 325 (2002): 1469–1471.Google Scholar
Parfitt, T., “Genes, Religion and History: The Creation of a Discourse of Origin Among a Judaizing African Tribe,” Jurimetrics 42 (2002): 209–219.Google Scholar
Botkin, J., “Privacy and Confidentiality in the Publication of Pedigrees,” JAMA 279 (1998): 1808–1812.CrossRefGoogle Scholar
Friedman-Ross, L., “Disclosing Misidentified Paternity,” Bioethics, 62 no. 2 (1996): 114–130.CrossRefGoogle Scholar
Stephen Post, “Adoption Theologically Considered,” Journal of Religious Ethics 25, no. 1 (1997): 149–167.Google Scholar
Roberts, D., “The Genetic Tie,” University of Chicago Law Review 62 (1995): 209–273.CrossRefGoogle Scholar
Zoloth, L., “Uncountable as the Stars: Inheritable Genetic Intervention and the Human Future — a Jewish Perspective,” in Chapman, A. Frankel, M., eds., Designing Our Descendents: The Promises and Perils of Genetic Modifications (Baltimore: Johns Hopkins University Press): 212–238.Google Scholar
Mirangoff, M. L., The Social Costs of Genetic Welfare (New Brunswick, NJ: Rutgers University Press, 1991).Google Scholar
Juengst, E., “Prevention and the Goals of Genetic Medicine,” Human Gene Therapy 6 (1995): 1595–1605.CrossRefGoogle Scholar
Cuckle, H., “Extending Antenatal Screening in the UK to Include Common Monogenic Disorders,” Community Genetics 4 (2001): 84–86.CrossRefGoogle Scholar
Risch, N. Burchard, E. Ziv, E. Tang, H., “Categorization of Humans in Biomedical Research: Genes, Race, and Disease,” Genome Biology 3 (2003): 2007.1–2007.12.Google Scholar
Weijer, C. Emmanuel, E., “Protecting Communities in Biomedical Research,” Science 289 (2000): 1142–1144; Foster, M. Sharp, R., “Involving Study Populations in the Review of Genetic Research,” Journal of Law, Medicine and Ethics 28 (2000): 41–52.CrossRefGoogle Scholar
Juengst, E., “Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous and Practically Useless,” Kennedy Institute of Ethics Journal 8 (1998): 183–200.CrossRefGoogle Scholar
Marshall, P. Rotimi, C., “Ethical Challenges in Community Based Research,” American Journal of the Medical Sciences 322, no. 5 (1999): 259–263.Google Scholar
Brunger, F., “Problematizing the Notion of ‘Community’ in Research Ethics,” in Knoppers, B., ed., Populations and Genetics: Legal and Socio-Ethical Perspectives (Boston: Martinus Nijhoff Publishers, 2003): 245–247.Google Scholar
Ossario, P., “Common Heritage Arguments and the Patenting of Human DNA,” in Chapman, A., ed., Perspectives on Genetic Patenting: Religion, Science and Industry in Dialogue (Washington, D.C.: American Association for the Advancement of Science, 1999): 89–111.Google Scholar
Thorsteindottir, H. Dar, A. Smith, R. Singer, P., “Do Patents Encourage or Inhibit Genomics as a Global Public Good?” in Knoppers, B., ed., Populations and Genetics: Legal and Socio-Ethical Perspectives (Boston: Martinus Nijhoff Publishers, 2003): 487–504.Google Scholar
Merz, J. McGee, G. Sankar, P., “Iceland, Inc? On the Ethics of Commercial Population Genomics,” Social Science and Medicine 58 (2004): 1201–1209.Google Scholar
Merz, J. et al. , “Protecting Subject’s Interest in Genetics Research,” American Journal of Human Genetics 10 (2002): 965–971.CrossRefGoogle Scholar
Terry, P., “PXE International: Harnessing Intellectual Property Law for Benefit-Sharing,” in Knoppers, B., ed., Populations and Genetics: Legal and Socio-Ethical Perspectives (Boston: Martinus Nijhoff Publishers, 2003): 377–395.Google Scholar
Burchard, E. Ziv, E. Coyle, N. et al. “The Importance of Race and Ethnic Background in Biomedical Research and Clinical Practice,” NEJM 348 (2003): 1170–1175; Lee, S. Koenig, B., “Racial Profiling of DNA Samples: Will it Affect Scientific Knowledge about Human Genetic Variation?” in Knoppers, B., ed., Populations and Genetics: Legal and Socio-Ethical Perspectives (Boston: Martinus Nijhoff Publishers, 2003): 231–245.CrossRefGoogle Scholar
Cooper, R. Kaufman, J. Ward, R., “Race and Genomics,” NEJM 348 (2003): 1166–1170; Gannett, L., “Racism and Human Genome Diversity Research: The Ethical Limits of “Population Thinking,”Philosophy of Science 68 (2001): S479–S492.CrossRefGoogle Scholar
Zilinskas, R. Balint, P., eds., The Human Genome Project and Minority Communities: Ethical, Social and Political Dilemmas (Westport, CT: Praeger, 2001).Google Scholar
Clayton, E. W., “The Complex Relationship of Genetics, Groups, and Health: What it Means for Public Health,” Journal of Law, Medicine and Ethics 30 (2002): 290–297.CrossRefGoogle Scholar
Ellison, G. Jones, I., “Social Identities and the ‘New Genetics’: Scientific and Social Consequences,” Critical Public Health 12 (2002): 265–282; Kahn, J., “Statistical Mischief and Racial Profiling in Heart Failure Research,”Perspectives in Biology and Medicine 46 (2003): 473–483.CrossRefGoogle Scholar
Kahn, J., “How a Drug Becomes ‘Ethnic’: Law, Commerce and the Production of Racial Categories in Medicine,” Yale Journal of Health Policy, Law and Ethics 4 (2004): 101–127.Google Scholar
Hood, L. Rown, L., “Genes, Genomes and Society,” in Rothstein, M., ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven: Yale University Press, 1997): 21–29.Google Scholar
Annas, G. Andrews, L. Isasi, R., “Protecting the Endangered Human: Toward an International Treaty Prohibiting Cloning and Inheritable Alterations,” American Journal of Law and Medicine 28 (2002): 151–178.Google Scholar
See Annas, , supra note 61: 153.Google Scholar
For a useful “Bioethicist’s Guide” to current thinking about species, see Robert, J. Baylis, F., “Crossing Species Boundaries,” American Journal of Bioethics 3, no. 3 (2003).Google Scholar
For a critical review, see Mauron, A. Thevoz, J.M., “Germ-line Engineering: A Few European Voices,” Journal of Medicine and Philosophy 16 (1991): 649–666.CrossRefGoogle Scholar
Capron, A., “Which Ills to Bear? Reevaluating the ‘Threat’ of Modern Genetics,” Emory Law Journal 39 (1990): 665–696.Google Scholar
Watson, James, quoted in Allen, A., supra note 6, at 29.Google Scholar
See Zoloth, , supra note 2, at 34.Google Scholar