Hostname: page-component-586b7cd67f-r5fsc Total loading time: 0 Render date: 2024-11-27T16:59:01.507Z Has data issue: false hasContentIssue false
  • English
  • Français

Parental Autonomy and the Obligation Not to Harm One's Child Genetically

Published online by Cambridge University Press:  01 January 2021

Ronald M. Green
Get access Rights & Permissions [Opens in a new window]

Extract

Until recently, genetics counselors and medical geneticists considered themselves lucky if they could provide parents with predictive information about a small number of severe genetic disorders. Testing and counseling were indicated primarily for conditions of thithis s sort. Out of respect for the autonomy of parental reproductive decision making, the prevailing ethic of genetic counseling stressed nondirectiveness and value neutrality As summarized by Arthur Caplan, the hallmarks of this stance include

a willingness to provide testing and counseling to all who voluntarily seek it, the presentation of information concerning findings in a manner that is balanced and comprehensible to patients or clients, the fair and balanced presentation of all options for action if a problem is discovered, a willingness to answer all questions asked by those seeking services, and an obligation to protect privacy and confidentiality at all times regardless of societal needs or benefits.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 25 , Issue 1 , Spring 1997 , pp. 5 - 15
Copyright
Copyright © American Society of Law, Medicine and Ethics 1997

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

Caplan, A.L., If I Were a Rich Man, Could I Buy a Pancreas? (Bloomington: Indiana University Press, 1992): At 131.Google Scholar
Andrews, L.B., “Legal Aspects of Genetic Information,” Yale Journal of Biology and Medicine, 64 (1991): At 36–39.Google Scholar
Annas, G.J. Elias, S., “Maternal Serum AFP: Educating Physicians and the Public,” American Journal of Public Health, 75 (1985): 1374–75; Steinbrook, R., “In California, Voluntary Mass Prenatal Screening,” Hastings Center Report, 16, no. 5 (1986): 5–7; and Andrews, L.B. et al. , Institute of Medicine, Assessing Genetic Risk: Implications for Health and Social Policy (Washington, D.C.: National Academy Press, 1994): At 276–77.CrossRefGoogle Scholar
Strong, C., “Tomorrow's Prenatal Testing: Should We Test for ‘Minor’ Diseases?,” Archives of Family Medicine, 2 (1993): 1187–93; Clarke, A. et al. , “The Genetic Testing of Children: Report of the Working Party of the Clinical Genetics Society (UK),” Journal of Medical Genetics, 31 (1994): 785–97; Wertz, D.C. Fanos, J.H. Reilly, P.R., “Genetic Testing for Children and Adolescents: Who Decides?,” JAMA, 272 (1994): 875–81; Hoffmann, D.E. Wulfsberg, E., “Testing Children for Genetic Predispositions: Is It in Their Best Interest?,” Journal of Law, Medicine & Ethics, 23 (1995): 331–44; and American Society of Human Genetics Board of Directors, American College of Medical Genetics Board of Directors, “ASHG/ACMG Report: Points to Consider: Ethical, Legal, and Psychosocial Implications of Genetic Testing in Children and Adolescents,” American Journal of Human Genetics, 57 (1993): 1233–41.CrossRefGoogle Scholar
See Strong, , supra note 4; Kitcher, P., The Lives to Come: The Genetic Revolution and Human Possibilities (New York: Simon & Schuster, 1996): 204–19; and Botkin, J.R., “Fetal Privacy and Confidentiality,” Hastings Center Report, 25, no. 5 (1995): 32–39.Google Scholar
Nance, W.E., “Parables,” in Barrels, D.M. LeRoy, B.S. Caplan, A.L., eds., Prescribing our Future: Ethical Challenges in Genetic Counseling (New York: Aldine De Gruyter, 1993): 89–94.Google Scholar
See id. at 92; and Coucke, P. et al. , “Linkage of Autosomal Dominant Hearing Loss to the Short Arm of Chromosome 1 in Two Families,” N. Engl. J. Med., 331 (1994): 425–31.CrossRefGoogle Scholar
Shiang, R. et al. , “Mutations in the Transmembrane Domain of FGFR3 Cause the Most Common Genetic Form of Dwarfism, Achondroplasia,” Cell, 78 (1994): 335–42.CrossRefGoogle Scholar
Kelly, T.E., Clinical Genetics and Genetic Counseling (Chicago: Book Medical Publishers, 2nd ed., 1986): At 292–93.Google Scholar
Radio interview with Wasmuth, J.J., National Public Radio, “All Things Considered” (Feb. 7, 1995).Google Scholar
Twiss, S.B., “Parental Responsibility for Genetic Health,” Hastings Center Report, 4, no. 2 (1974): 9–11; Twiss, S.B., “Ethical Issues in Genetic Screening: Models of Genetic Responsibility,” in Bergsma, D. et al. , eds., Ethical, Social and Legal Dimensions of Screening for Human Genetic Disease (New York: Stratton Intercontinental Medical Book, 1974): 225–61; Purdy, L.M., “Genetic Diseases: Can Having Children Be Immoral?,” in Buckley, J.J., ed., Genetics Now: Ethical Issues in Genetic Research (Washington D.C.: University Press of America, 1978): 25–39; Shaw, M., “Conditional Prospective Rights of the Fetus,” Journal of Legal Medicine, 5 (1984): 63–116; Czeizel, A., The Right to be Born Healthy: Ethical Problems of Genetic Counseling in Hungary (New York: Alan R. Liss, 1988); Steinbock, B. McClamrock, R., “When is Birth Unfair to the Child?,” Hastings Center Report, 24, no. 6 (1994): 15–21; and Cohen, C.B., “‘Give Me Children or I Shall Die!’: New Reproductive Technologies and Harm to Children,” Hastings Center Report, 26, no. 2 (1996): 19–27.CrossRefGoogle Scholar
Robertson, J.A., Children of Choice (Princeton: Princeton University Press, 1994): Ch. 2.Google Scholar
See Botkin, , supra note 5, at 33. Jeffrey Botkin argues that some parental requests for generic information about their embryo or fetus can inflict psychological harms on the future child or can limit the child's freedom. Although Dr. Botkin's position is similar in form to the one I offer here, my argument focuses on the need to avoid clear physical harms to the child. I do not agree that the putative psychological or other harms he lists justify limiting parental autonomy.Google Scholar
Levinson, G. et al. , “Recent Advances in Reproductive Genetic Technologies,” Bio/Technology, 13 (1995): 968–73.Google Scholar
Parfit, D., Reasons and Persons (Oxford: Clarendon Press, 1984); and Heyd, D., Genethics: Moral Issues in the Creation of People (Berkeley: University of California Press, 1992). Related treatments of this issue include Warren, M.A., “Do Potential People Have Moral Rights?,” Canadian Journal of Philosophy, 7 (1977): 275–89; Sikora, R.I. Barry, B., Obligations to Future Generations (Philadelphia: Temple University Press, 1978); Kavka, G., “The Paradox of Future Individuals,” Philosophy and Public Affairs, 11 (1982): 93–112; Woodward, J., “The Non-identity Problem,” Ethics, 96 (1986): 804–31; Hanser, M., “Harming Future People,” Philosophy and Public Affairs, 19 (1990): 47–70; Faden, R., “Reproductive Genetic Testing and the Ethics of Parenting,” Fetal Diagnosis and Therapy, 8, Supp. 1 (1993): 142–47; Steinbock, McClamrock, , supra note 11; Brock, D., “The Non-identity Problem and Genetic Harms—The Case of Wrongful Handicaps,” Bioethics, 9 (1995): 269–75; and Heller, J.C., Human Genome Research & The Challenge of Contingent Future Persons (Omaha: Creighton University Press, 1966).Google Scholar
Jecker, N.S., “The Ascription of Rights in Wrongful Life Suits,” Law and Philosophy, 6 (1987): 149–65; Peters, P.G. Jr., “Rethinking Wrongful Life: Bridging the Boundary Between Tort and Family Law,” Tulane Law Review, 67 (1992): 397–454; and Kelly, M.B., “The Rightful Position in ‘Wrongful Life’ Actions,” Hasting Law Journal, 42 (1991): 505–89.CrossRefGoogle Scholar
See Kelly, , supra note 16, at 537.Google Scholar
See id. at 525.Google Scholar
Green, R.M. Gert, B. Clouser, K.D., “The Method of Public Morality versus the Method of Principalism,” Journal of Medicine and Philosophy, 18 (1993): 479–91.CrossRefGoogle Scholar
Callahan, S., “An Ethical Analysis of Responsible Parenthood,” in Capron, A.M. et al. , eds., Genetic Counseling: Facts, Values and Norms (New York: Alan R. Liss, 1979): 217–38.Google Scholar
Kahn, J.P., “Genetic Harm: Bitten by the Body that Keeps You?,” Bioethics, 5 (1991): 289–308.CrossRefGoogle Scholar
See Heyd, , supra note 15, at 44–45.Google Scholar
Feinberg, J., “The Child's Right to an Open Future,” in Aiken, W. LaFollette, H., eds., Children's Rights, Parental Authority, and State Power (Totowa: Rowman and Littlefield, 1980): 124–53.Google Scholar
See Twiss, , “Parental Responsibility for Genetic Health,” supra note 11, at 9.CrossRefGoogle Scholar
Arras, J.D., “Having Children in Fear and Trembling,” Milbank Quarterly, 68 (1990): 53–82; Cohen, W.R., “Maternal-Fetal Conflict, I,” in Goldworth, A. et al. , eds., Ethics and Perinatology (New York: Oxford University Press, 1995): 10–28; Jos, P.H. Marshall, M.F. Perlmutter, M., “The Charleston Policy on Cocaine Use During Pregnancy: A Cautionary Tale,” Journal of Law, Medicine & Ethics, 23 (1995): 120–28; and Macklin, R., “Maternal-Fetal Conflict, II,” in Goldworth, et al. , eds., id. at 29–46.CrossRefGoogle Scholar
Jordan, I.K., “Ethical Issues in the Genetic Study of Deafness,” in Ruben, R.J. Van De Water, T.R. Steel, K.P., eds., “Genetics of Hearing Impairment,” Annals of the New York Academy of Sciences, 630 (1991): 236–39.CrossRefGoogle Scholar
Arnos, K.S. Israel, J. Cunningham, M., “Genetic Counseling of the Deaf: Medical and Cultural Considerations,” in Van De Ruben, Water Steel, , eds., supra note 26, at 212–22; Christiansen, J.B., “Sociological Implications of Hearing Loss,” in Van De Ruben, Water Steel, , eds., supra note 26, at 230–35; Dolnick, E., “Deafness as a Culture,” Atlantic Monthly, 272 (1993): 37–53; and Solomon, A., “Defiantly Deaf,” New York Times Magazine, Aug. 24, 1994, at 38–45, 62–68.Google Scholar
See Kelly, , supra note 9.Google Scholar
Sawisch, L., “A Different Approach,” in Ball, S., ed., Strategies in Genetic Counseling: The Challenge of the Future (New York: Human Sciences Press, vol. 1, 1988): 96–108; Lippman, A., “Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities,” American Journal of Law & Medicine, XXVII (1991): 15–50; Asch, A., “The Human Genome and Disability Rights,” Disability Rag & Resource, Jan./Feb. (1994): 12–15; and Saxton, M., “Commentary on ‘Society's Diseases,”’ Hastings Center Report, 26, no. 3 (1996): 22.Google Scholar
Wertz, D.C., “Ethical and Legal Implications of the New Genetics: Issues for Discussion,” Social Science and Medicine, 35 (1992): 495–505.CrossRefGoogle Scholar
See Kitcher, , supra note 5, at 236–37.Google Scholar
Motulsky, A.G. Murray, J., “Will Prenatal Diagnosis with Selective Abortion Affect Society's Attitude Toward the Handicapped?,” in Berg, K., ed., Research Ethics (New York: Alan R. Liss, 1983): 277–91.Google Scholar
Wertz, D.C. Fletcher, J.C., “A Critique of Some Feminist Challenges to Prenatal Diagnosis,” Journal of Women's Health, 2 (1993): 173–88.CrossRefGoogle Scholar
See supra note 11.Google Scholar
Caplan, A.L., “Neutrality is Not Morality: The Ethics of Genetic Counseling,” in Barrels, LeRoy, Caplan, , eds., supra note 6, at 158.Google Scholar
See Robertson, , supra note 12.Google Scholar

A correction has been issued for this article:

Corrections