Genetic discrimination: Perspectives of consumers

Science

Volumn 274, Issue 5287, 1996, Pages 621-624

  Lapham, E Virginia ^a   Kozma, Chahira ^a   Weiss, Joan O ^b  

^a GEORGETOWN UNIVERSITY   (United States)

^b Alliance of Genetic Support Groups   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CONSUMER; EMPLOYEE; GENETIC DISORDER; GENETIC SCREENING; GENOME; HEALTH CARE DELIVERY; HEALTH INSURANCE; MEDICOLEGAL ASPECT; PREEMPLOYMENT MEDICAL EXAMINATION; PRIORITY JOURNAL;

EMPIRICAL APPROACH; FAMILY MEMBERS; GENETIC DISORDERS; GENETIC INFORMATION; GENETICS AND REPRODUCTION; HUMAN GENOME PROJECT; SOCIAL DISCRIMINATION; SURVEY; UNITED STATES;

ADULT; AGED; BIOETHICS; CONFIDENTIALITY; DISCLOSURE; EMPLOYMENT; FEMALE; GENETIC DISEASES, INBORN; GENETIC PRIVACY; GENETIC SCREENING; HUMAN GENOME PROJECT; HUMANS; INSURANCE COVERAGE; INSURANCE SELECTION BIAS; INSURANCE, HEALTH; INSURANCE, LIFE; MALE; MEDICALLY UNINSURED; MIDDLE AGED; PREJUDICE; QUESTIONNAIRES; SELF-HELP GROUPS; UNITED STATES;

EID: 0029831202     PISSN: 00368075     EISSN: None     Source Type: Journal    
DOI: 10.1126/science.274.5287.621     Document Type: Article

References (29)

1. National Center for Human Genome Research, National Institutes of Health, The Human Genome Project: From Maps to Medicine (NIH Publication No. 95-3897, Bethesda, MD, 1995).
2. G. Geller et al. J. Law Med. Ethics 21, 238 (1993).
3. N. E. Kass, Hastings Cent. Rep. 22, S6 (1992); T. H. Murray, ibid., p. S12.
4. N. E. Kass, Hastings Cent. Rep. 22, S6 (1992); T. H. Murray, ibid., p. S12.
5. E. Draper, ibid., p. S15.
6. L. B. Andrews, J. E. Fullarton, N. A. Holtzman, A. G. Mutulsky, Eds. Assessing Genetic Risks: Implications for Health and Social Policy (National Academy Press, Washington, DC, 1994).
7. The Ad Hoc Committee on Genetic Testing/Insurance Issues, Am. J. Hum. Genet. 56, 327 (1995).
8. T. H. Murray, "The Human Genome Project and Genetic Testing: Ethical Implications," Report of a Conference on the Ethical and Legal Implications ot Genetic Testing: The Genome, Ethics and the Law," American Association for the Advancement of Science, 14 to 16 June 1991.
9. R. M. Cook-Deegan, in Biomedical Politics, K. E. Hanna, Ed. (National Academy Press, Washington, DC, 1991), p. 148.
10. F. S. Collins, J. Clin. Ethics 2, 4 (1991).
11. H. Ostrer, Am. J. Hum. Genet. 52, 565 (1993); U.S. Congress, Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace, OTA-BA-455 (U.S. Government Printing Office, Washington, DC, 1990).
12. H. Ostrer, Am. J. Hum. Genet. 52, 565 (1993); U.S. Congress, Office of Technology Assessment, Genetic Monitoring and Screening in the Workplace, OTA-BA-455 (U.S. Government Printing Office, Washington, DC, 1990).
13. Genetic Information and Health Insurance: Report of the Task Force on Genetic Information and Insurance (National Institutes of Health-Department of Energy Working Group on the Ethical, Legal, and Social Implications of Human Genome Research, 10 May 1993).
14. See, for example, P. R. Billings et al., Am. J. Hum. Genet. 50, 476 (1992).
15. As the interviews progressed and it was apparent that few members of ethnic or racial minorities were volunteering, additional telephone outreach was made to support groups to increase awareness of the project and opportunities for volunteering. This was only partially successful as seen in the demographic data.
16. There were no statistically significant differences in the responses on the telephone and written interviews so they are reported here together.
17. Of the 332 respondents, 80% were female, 57% have at least a bachelors degree, and 90% were Caucasian. Other characteristics were: 75% were married and living with their spouses, 76% have children, and 63% work outside the home. Family relationship, whether or not the respondent or family members were affected, age of diagnosis, and current age were also recorded.
18. Precise data on the demographics of genetic support groups are not available. Impressions are from staff of the Alliance of Genetic Support Groups based on their conversations and communications with the member organizations and attendance at national, regional, and local meetings.
19. Religious preferences were Roman Catholic, 26%; Protestant, 41%; Christian-other, 9%; Jewish, 11%; other, 2%; and none, 12%.
20. The interviewers were trained in interview techniques by the principal investigator and participated in pretesting the questionnaire.
21. The questions on possible genetic discrimination were taken from a questionnaire developed by Dr. Dorothy C. Wertz, The Shriver Center, Waltham, MA, entitled. Ethical Issues in Genetics, Part I, p. 33, No. 34, and used with permission of Dr. Wertz (letter of 16 December 1993).
22. This definition of genetic discrimination differs from the one used by Billings et al. (12) as they did not include actions against persons who were symptomatic or visibly affected by their genetic disorders. The design of our questionnaire does not permit analysis according to the definition of Billings et al. (1993). Because the questions on discrimination ask about all family members at once, the questions do not distinguish among: (i) the direct consequences of ongoing genetic disease or conditions, (ii) the effect of genetic disease on other family members, and (iii) the consequences of genetic information gained through testing.
23. M. J. Ellis Kahn, in a video by the HuGEM Project, An Overview of the Human Genome Project and Its Ethical, Legal, and Social Issues (Georgetown University Medical Center, Washington, DC, 1995).
24. K. H. Rothenberg, J. Law Med. Ethics 23, 313 (1995).
25. The Ad Hoc Committee on Genetic Testing/Insurance Issues, Am. J. Hum. Genet. 56, 328 (1995).
26. "Report of the ACLI-HIAA Task Force on Genetic Testing," The American Council of Life Insurance and The Health Insurance Association of America (1991).
27. Many respondents said they had never applied for life insurance because they assumed they would be turned down.
28. Since 1990, the Americans with Disabilities Act (ADA) has provided protection for persons with disabilities in the workplace. The ADA prevents employ ers from openly denying employment or firing an individual solely on the basis of a "disability" if there are "reasonable accommodations" that can be made in the work setting to allow the person to perform his or her job. In April 1995, the ADA was interpreted by the U.S. Equal Employment Opportunity Commission to include healthy people who are carriers of genetic disorders. Implementation in general relies on employers and employees knowing and similarly interpreting the law as well as having good faith efforts to comply.
29. We wish to thank the HuGEM Advisory Committee: N. A. Holtzman, F. Neal-Smith, E. O. Nightingale, K. H. Rothenberg, and L. Walters, for assistance in planning and carrying out the study. We also wish to thank L. Palincsar, M. A. Wilson, S. Rennert, and M. Volner, for their assistance with the telephone interviews and M. J. Verdieck and M. O'Reilly for research assistance. Most of all, we wish to thank the consumers who provided the data. Funded by the National Institutes of Health at the National Center for Human Genome Research in the branch of Ethical, Legal and Social Issues, grant number RO1-HG00786-03. This support does not constitute an endorsement of the views expressed in this article.