American families are a segment of the public that will feel the impact of the Human Genome Project most acutely: but they are also one of the least well studied segments with regard to that impact. Three sets of ethical problems, in particular, deserve more scrutiny: the effect of increased genetic risk assessment on family members' willingness to assist their kin discover mutually incriminating genetic risks, its impact on the candor with which extended families communicate within themselves about their genetic health risks, and its influence on the ways that families seek to protect the interests of their most vulnerable members. In each of these areas, anecdotal experience already shows how genetic testing can undermine a family's commitment to its own interdependence in these ways, and that traditional, multigenerational, sessile families are likely to experience more disruption than either blended families or “virtual families” linked primarily through electronic communication.
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References
1.
National Research Council , Mapping and Sequencing the Human Genome (Washington, DC: National Academy Press, 1988).
2.
E. Thomson , Ethical, Legal and Social Implications Program: Grants, Contracts, and Related Activities (Bethesda, MD: National Human Genome Research Institute, 6 May 1996).
3.
E. T. Juengst , “Respecting Human Subjects in Genome Research: A Preliminary Policy Agenda,” in The Ethics of Research Involving Human Subjects: Facing the 21st Century, ed. H. Vanderpool (Frederick, MD: University Publishing Group, 1996), pp. 401-429.
4.
E. T. Juengst , “The Ethics of Prediction: Genetic Risk and the Physician—Patient Relationship.”Genome Science and Technology1 (1995): 21-35.
5.
M. Rothstein , “The Use of Genetic Information for Nonmedical Purposes,”Journal of Law and Health9 (1994-5): 109-120.
6.
President's Commission for the Study of the Ethical Problems in Medicine and Biomedical and Behavioral Research , Screening and Counseling for Genetic Conditions (Washington, DC: U.S. Government Printing Office, 1983), p. 55.
7.
H. Lindemann Nelson and J. Lindeman Nelson, The Patient in the Family: An Ethics of Medicine and Families (New York: Routledge, 1995).
8.
S. Mintz and S. Kellogg, Domestic Revolutions: A Social History of American Family Life (New York: Free Press, 1988).
9.
J. Fishkin , Justice, Equal Opportunity and the Family (New Haven, CT: Yale University Press, 1983).
10.
cf. R. Shinn, “Family Relationships and Social Policy: An Ethical Inquiry,” in The Genetic Frontier: Ethics, Law and Policy, ed. M. Frankel and A. Teich (Washington, DC: American Association for the Advancement of Science, 1993), pp. 9-25.
11.
See, for example, Nelson and Nelson, Medicine in the Family, p. 76, where they point out that: “Moral relationships among family members can certainly be strained by betrayal or violence, but it takes a catastrophe to dissolve them; they can't be set aside merely as a matter of inclination or decision. To the extent that we are so closely entwined in the life of another that we become an important part of that person, we truly are stuck with each other.”
12.
See, for example, Post, Spheres of Love, pp. 81-108, where he argues that “Some adequate proportionality between giving and receiving love in the context of special relations [i.e. families] is a common moral expectation, a truly universal intuition.” (p. 81).
13.
R. M. Green and A. M. Thomas, “Whose Gene is it? A Case Discussion About Familial Conflict Over Genetic Testing for Breast Cancer,”Journal of Genetic Counseling6 (1997): 245-254.
14.
B. Biesecker and L. Brody, “Genetic Susceptibility Testing for Breast and Ovarian Cancer: a Progress Report.”Journal of the American Medical Women's Association52 (1997): 22-27.
15.
cf. B. Biesecker, M. Boehnke, K. Calzone, D. Markel, J. Garber, F. Collins, and B. Weber, “Genetic Counseling for Families with Inherited Susceptibility to Breast and Ovarian Cancer,”Journal of the American Medical Association269 (21 April 1993): 1970-1974.
16.
M. Yarborough , J. Scott, and L. Dixon, “The Role of Beneficence in Clinical Genetics: Non-directive Counseling Reconsidered,”Theoretical Medicine10 (1989): 139-149.
17.
Biesecker and Brody, p. 25.
18.
L. Parker and C. Lidz, “Familial Coercion to Participate in Genetic Family Studies: Is There a Cause for IRB Intervention?”IRB: A Review of Human Subjects Research16 (Jan.—April 1994): 6-12.
19.
T. M. Powell , D. Cox, S. Jeffery, and D. Cua, “Family Issues in the Decision to Under go BRCA Testing,”American Journal of Human Genetics63 (4) (1998): A204.
20.
R. J. Pokorski , “Insurance Underwriting in the Genetic Era,”American Journal of Human Genetics60 (1997): 205-216.
21.
cf. M. Huggins, M. Block, S. Kanani, et al., “Ethical and Legal Dilemmas Arising During Predictive Testing for Adult Onset Diseae: the Experience of Huntington Disease,”American Journal of Human Genetics47 (1990): 4-12.
22.
For example, Alice Wexler explains her own decision to remain uncertain about whether she carries the gene for Huntington's disease this way: “One man who tested negative felt as if he were missing a limb, a part of his identity. `I had lost my creative terror' he said.... Choosing not to take the test is a decision one can easily revoke, unlike the situation after testing. As Geri Harville said, `You and your family will be affected by this information forever. Once you have the information, you cannot give it back.' I have made my peace, more or less, with uncertainty.... Perhaps I even enjoy the ambiguity, resisting sharp categories and binary definitions, the border guards insisting that we place ourselves in one camp or the other.” From A. Wexler, Mapping Fate: A Memoir of Family, Risk and Genetic Research (New York: Random House, 1995), p. 238.
23.
cf. J. K. M. Gevers, “Genetic Testing: The Legal Position of Relatives of Test Subjects,”Medicine and Law7 (1988): 161-165.
24.
P. R. Winter , G. L. Wiesner, J. Finnegan, et al.“Notification of a Family History of Breast Cancer: Issues of Privacy and Confidentiality,”American Journal of Medical Genetics66 (1996): 1-6.
25.
Wexler , Mapping Fate, p. 75.
26.
L. Andrews , “Gen-Etiquette: Genetic Information, Family Relationships and Adoption,” in Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, ed. M. Rothstein (New Haven, CT: Yale University Press), pp. 255-281.
27.
E. W. Clayton , “Removing the Shadow of the Law from the Debate about Genetic Testing of Children,”American Journal of Medical Genetics571995): 630.
28.
Andrews , “Gen-Etiquette,” p. 273.
29.
M. Shaw , “Testing for the Huntington Gene: a Right to Know, a Right not to Know, or a Duty to Know,”American Journal of Human Genetics26 (1987): 243-246.
30.
R. Wachbroit , “Rethinking Medical Confidentiality: The Impact of Genetics,”Suffolk University Law Review27 (1993): 1391-1410.
31.
cf. T. H. Murray, The Worth of a Child (Berkeley, CA: SAGE Publications, 1996).
32.
D. Callahan , “What Do Children Owe Their Elderly Parents?,”Hastings Center Report15 (1985): 32-37.
33.
A. Buchanan and D. Brock, Deciding for Others: The Ethics of Surrogate Decision-making (Cambridge: Cambridge University Press, 1989), p. 136.
34.
A. Buchanan , “Choosing Who Will be Disabled: Genetic Intervention and the Morality of Inclusion,”Social Philosophy and Policy13 (1996): 18-47.
35.
T. Marteau and H. Drake, “Attributions for Disability: The Influence of Genetic Screening,”Social Science and Medicine40 (1995): 1127-1132.
36.
A. Charo and K. Rothenberg, “ `The Good Mother': The limits of reproductive accountability and genetic choice,” in Women and Prenatal Testing: Facing the Challenges of Genetic Technology ed. E. Thomson and K. Rothenberg (Columbus, OH: Ohio State University Press, 1994), pp. 105-131.
37.
R. Faden , “Reproductive Genetic Testing, Prevention and the Ethics of Mothering,” in Women and Prenatal Testing: Facing the Challenges of Genetic Technology ed. E. Thomson and K. Rothenberg (Columbus, OH: Ohio State University Press, 1994), pp. 88-98.
38.
ASHG/ACMG , “Points to Consider: Ethical, Legal and Psychosocial Implications of Genetic Testing in Children and Adolescents,”American Journal of Human Genetics57 (1995): 1233-1241.
39.
C. Cohen , “Wrestling with the Future: Should we Test Children for Adult-onset Genetic Conditions?,”Kennedy Institute of Ethics Journal8 (1998): 111-130.
40.
B. Gottleib , The Family in the Western World (Oxford: Oxford University Press, 1993).
41.
R. Macklin , “Artificial Means of Reproduction and our Understanding of the Family,”The Hastings Center Report21 (1991): 5-12.
42.
G. M. Petersen and P.A. Boyd, “Gene Tests and Counseling for Colorectal Cancer Risks: Lessons From Familial Polyposis,”Journal of the National Cancer Institute17 (1995): 67-71.
43.
D. Smith , et al., Early Warning: Cases and Ethical Guidance for Presymptomatic Testing in Genetic Diseases (Bloomington, IN: Indiana University Press, 1998), p. 72.
44.
P. Smith , “Family Responsibility and the Nature of Obligation,” in Kindred Matters: Rethinking the Philosophy of the Family, ed. D. Meyers, K. Kipnis, and C. Murphy (Ithaca, NJ: Cornell University Press, 1993): p. 47.
45.
J. Maley , An Ethics Casebook for Genetic Counselors (Charlottesville, VA: Center for Biomedical Ethics and Division of Medical Genetics, University of Virginia, 1994): 36-41.
46.
In the analogous context of HIV testing, see C. Levine, “AIDS and the Changing Concepts of Family,”Milbank Quarterly68, suppl. 1 (1990): 37-50.
47.
P. Smith , “Family Responsibility and the Nature of Obligation,” p. 47.
48.
R. Bellah , R. Madsen, W. Sullivan, A. Swidler, and S. Tipton, Habits of the Heart: Individualism and Commitment in American Life (Berkeley, CA: SAGE Publications, 1985), p. 89.
49.
D. Smith , et al., Early Warning, p. 21.
50.
D. Shore , et al., “Legal and Ethical Issues in Psychiatric Genetic Research,”American Journal of Medical Genetics48 (1993): 17-22.
