Abstract
During the past year, the bioethical issues generated by genetic screening (and its related activity, genetic counseling) have received renewed attention. Some of the current discussion returns to issues that were extensively debated the to fifteen years ago,1 but others are receiving close scrutiny for the first time. The new attention results from several recent or prospective developments in screening capabilities, which in turn have stimulated studies by two governmental bodies. Those reports, by the President’s Commission on ethical problems in medicine and research and by the Office of Technology Assessment (OTA),2 are complementary and provide the basis for this review article.
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Notes and References
Seee.g., Research Group on Ethical, Social and Legal Issues in Genetic Counseling and Genetic Engineering, Institute of Society, Ethics and the Life Sciences, “Ethical and Social Issues in Screening for Genetic Disease,” New England Journal of Medicine 286, 1972, 1129–32; Maureen Harris, ed., Early Diagnosis of Human Genetic Defects: Scientific and Ethical Considerations, Fogarty International Center Proceedings No. 6, DHEW, (Washington: US Government Printing Office, 1972); Michael Hamilton, ed., The New Genetics and the Future of Man (Grand Rapids: William B. Eerdmans Publishing Co., 1972); Bruce Hilton, Daniel Callahan, Maureen Harris, Peter Condliffe, and Burton Berkley, eds., Ethical Issues in Human Genetics (New York: Plenum Press, 1973); Daniel Bergsma, Marc Lappé, Richard O. Roblin, and James M. Gustafson, eds., Ethical, Social and Legal Dimensions of Screening for Human Genetic Disease, National Foundation, Birth Defects Original Article Series, Vol. 10, No. 6 (New York: Stratton Intercontinental Medical Book Corp., 1974); Charles Birch and Paul Abrecht, eds., Genetics and the Quality of Life (Potts Point, NSW: Pergamon Press, 1975); Committee for the Study of Inborn Errors of Metabolism, National Research Council, Genetic Screening: Programs, Principles, and Research (Washington: National Academy of Sciences, 1975.
President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Screening and Counseling for Genetic Conditions: The Ethical, Social, and Legal Implications of Genetic Screening, Counseling, and Education Programs (Washington: US Government Printing Office, 1983); Office of Technology Assessment, Congress of the United States, The Role of Genetic Testing in the Prevention of Occupational Disease (Washington: US Government Printing Office, 1983).
Genetic testing often requires only a simple blood test and laboratory analysis. Some forms of screening, however, are performed on cells that have been grown in a laboratory. This is true of most diagnoses done during pregnancy, which usually involve analysis of cells found in a sample of amniotic fluid surrounding a fetus, although some prenatal diagnoses rely on examinations of the fetus by sonography, fetoscopy, or other techniques. President’s Commission, supra, note 2, at 2.
Ibid. at 3–4.
Ibid. at 1.
Ibid. at 87.
Ibid. at 41.
Herbert A. Lubs, “Privacy and Genetic Information,” in Bruce Hilton, Daniel Callahan, Maureen Harris, Peter Condliffe, and Burton Berkley, eds., supra note 1, at 267.
One example of this situation is the clinical diagnosis of multiple polyposis of the colon, a condition that is a precursor to cancer. Early detection and treatment―before the onset of symptoms―greatly improves the prognosis. Once the condition is detected clinically in one family member, therefore, the question is whether the physician, guided by the knowledge that the disease is genetic, should try to advise others in the family to be screened. President’s Commission, supra note 2. at 43.
See, e.g., C. Leake, ed., Percival’s Medical Ethics (1927); Patrick v. Sedwick. 391 P.2d 453 (Alaska 1964) (dictum).
President’s Commission, supra note 2. at 43–44.
The court’s holding in Simonsen [v. Swenson] was actually that the disclosure of the contagious disease there was “not ... a betrayal of the confidence of the patient” [104 Neb. 224, 228, 177 N.W. 831, 832 (1920) (per curiam)] since he must have known that such information would have to be revealed. Although a patient entering genetic counseling today would probably not contemplate that his or her condition would have to be revealed to anyone, a counselor could avoid the need for overriding the counselee’s wishes after-the-fact by informing him or her at the outset of the clinic’s policy on contacting relatives .... In any event, an advance statement of policy can serve to make any ultimate decision seem less arbitrary and ad hoc and to place it for the counselee into a larger picture of social expectations about familial obligations. A.M. Capron, “Tort Liability in Genetic Counseling,” Columbia Law Review 79, 1979, 618, 679.
President’s Commission, supra note 2, at 44.
S. B. Twiss, “Ethical Issues in Genetic Screening: Models of Genetic Responsibility,” in Daniel Bergsma, Marc Lappé, Richard O. Robbin, and James F. Gustafson, eds., supra note 1, at 225, 236.
An important observation to make about the family in our society is precisely its indeterminacy. Family “self” images, so to speak, are stipulated by the members themselves. That is, the significant boundaries of a family are family-specific. Moreover, in our society interest in genealogy, in keeping up with extended family lineages, is on the decline. And note well that the range and extent of the sense of familial responsibility varies directly with the “self” definition of a narticular family. Ibid.
Ibid. at 237. Twiss goes on to address the serious problems one would face in attempting to give content to this obligation, such as assumptions about “normalcy,” the difficulty of specifying which genetic disorders are “serious” enough to be absolutely avoided, and the conflict of this duty with other parental rights and interests (e.g., voluntary procreation). Ibid. at 247–248.
Ibid. at 238.
See Lon Fuller, The Morality of Law (rev. ed. 1969), 9.
President’s Commission, supra note 2, at 44.
Ibid. at 45.
J.M. Gustafson, “Genetic Screening and Human Values,” in Daniel Bergsma, Marc Lappé, Richard O. Robbin, and James F. Gustafson, eds., supra note 1, at 201.
Although reasons can be given for what the person values, believes, and desires, there are also affective qualities in valuing, believing, and desiring that reflect his “vision,”―his being weighted toward certain ends. Ibid. at 202.
See, e.g., Committee for the Study of Inborn Errors of Metabolism, supra note 1.
Ruth R. Faden et al., “A Survey to Evaluate Parental Consent as Public Policy for Neonatal Screening,” American Journal of Public Health 72, 1982, 1347.
President’s Commission, supra note 2, at 47.
Ibid. at 48.
Ibid. at 49.
Ibid. at 51.
Faden et al., supra note 24.
See, e.g., Jefferson v. Griffin Spalding County Hospital Authority, 247 Ga. 86, 274 S.E.2d 457 (1981).
President’s Commission, supra note 2, at 51–52.
This difference occurs in part because the likelihood of transmission is often less certain in the case of genetic disease and because genetic transmission occurs within the family, rather than the public at large. But more fundamentally, it reflects the facts that the prevention of genetic disease can impinge on reproductive freedom and that modern means of genetic screening developed just as this freedom was receiving increasingly explicit and extensive protection as a facet of a constitutional “right of privacy.” President’s Commission, supra note 2, at 53–54, citing Laurence H. Tribe, American Constitutional Law, (Mineola, NY: Foundation Press, 1978), 886–990.
“ Inherited Disorders” (letter), Lancet 2, 1980. 806.
President’s Commission, supra note 2, at 55.
See Daniel Callahan, The Tyannny of Survival (New York: Macmillan, 1973.
President’s Commission, supra note 2, at 57.
Ibid. at 61.
Ibid. at 61–62.
Ibid. at 76, citing Werth v. Paroly, No. 7402516NM (Wayne Co., Mich. Ct., verdict, Jan. 12, 1979); Call v. Kezirian, 185 Cal. Rptr. 103(1982)
John W. Littlefield, “Introductory Remarks,” Annals of the New York Academy of Sciences 171b, 1970, 3791.
Melissa M. Adams, J. D. Erickson, P. M. Layde, G. P. Oakley, “Down’s Syndrome: Recent Trends in the United States,” Journal of the American Medical Association 246, 1981, 758; Lewis B. Holmes, “Genetic Conseling for the Older Pregnant Woman: New Data and Questions,” New England Journal of Medicine 298, 1978, 419.
Melissa M. Adams, S. Finley, H. Hansen, R. I. Jahiel, G. P. Oakley, Jr., W. Sanger, G. Wells, W. Wertelecki, “Utilization of Prenatal Genetic Diagnosis in Women 35 Years of Age and Older in the United States,” American Journal of Obstetrics and Gynecology 139, 1981, 673.
President’s Commission, supra note 2, at 81. Applying this general conclusion to the “35-and-over” policy on amniocentesis, the Commission recommended that the policy “should be reevaluted to determine whether fairness and equity would support a more flexible policy that made amniocentesis more generally available to younger women” Ibid. citing the recognition of a need for reconsideration stated by the AMA Council on Scientific Affairs, “Council Report: Genetic Counseling and Prevention of Birth Defects,” Journal of the American Medical Association 248, 1982. 221.
Office of Technology Assessment. supra note 2. at 8.
Ibid. at 112.
The most relevant are three federal statutes, the Occupational Safety and Health Act of 1970, 29 USC § § 651–678 (1976 and Supp. III 1979), Title VII of the Civil Rights Act of 1964, as amended, 42 USC § 2000e (1976 and Supp. II 1978), and Section 503 and 504 of the Rehabilitation Act of 1973, 29 USC § § 701–796 (1976, Supp. III 1979). The former is intended to ensure the safety of working conditions; under it the Secretary of Labor might regulate genetic testing in the workplace. More important, the other two acts are intended to prohibit employment discrimination; their affect could be buttressed by certain state statutes on fair employment practice.
Ihid. at 115.
Ibid.
See 45 C.F.R. Part 46 (1981).
Office of Technology Assessment, supra note 2, at 116.
Ibid. at 117.
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Capron, A.M. (1984). Current Issues in Genetic Screening. In: Humber, J.M., Almeder, R.T. (eds) Biomedical Ethics Reviews · 1984. Biomedical Ethics Reviews. Humana Press, Totowa, NJ. https://doi.org/10.1007/978-1-59259-440-5_5
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