Abstract
This essay reviews the efforts of the U.S. Human Genome Project to anticipate and address the ethical, legal, and social implications of new advances in human genetics. Since 1990, approximately $10 million has been awarded by the National Institutes of Health and the Department of Energy, in support of 65 research, education, and public discussion projects. These projects address four major areas of need: (1) the need for both client-centered assessments of new genetic services and for improved knowledge of the psychosocial and ethnocultural factors that shape clients' clinical genetic experiences; (2) the need for clear professional policies regarding human-subject research, clinical practice standards, and public health goals in human genetics; (3) the need for social policy protection against unfair access to and use of personal genetic information; and (4) the need for improved public and professional understanding and discussion of these issues. The Human Genome Project's goal is to have defined, by 1995, policy options and programs capable of addressing these needs.
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Selected References
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- Beckwith J. Foreword: the human genome initiative: genetics' lightning rod. Am J Law Med. 1991;17(1-2):1–13. [PubMed] [Google Scholar]
- Green E. D., Waterston R. H. The human genome project. Prospects and implications for clinical medicine. JAMA. 1991 Oct 9;266(14):1966–1975. [PubMed] [Google Scholar]
- Healy B. Hearing on the possible uses and misuses of genetic information. Hum Gene Ther. 1992 Feb;3(1):51–56. doi: 10.1089/hum.1992.3.1-51. [DOI] [PubMed] [Google Scholar]
- Huggins M., Bloch M., Kanani S., Quarrell O. W., Theilman J., Hedrick A., Dickens B., Lynch A., Hayden M. Ethical and legal dilemmas arising during predictive testing for adult-onset disease: the experience of Huntington disease. Am J Hum Genet. 1990 Jul;47(1):4–12. [PMC free article] [PubMed] [Google Scholar]
- Karjala Dennis S. A legal research agenda for the Human Genome Initiative. Jurimetrics. 1992 Winter;32(2):121–222. [PubMed] [Google Scholar]
- Mahadevan M., Tsilfidis C., Sabourin L., Shutler G., Amemiya C., Jansen G., Neville C., Narang M., Barceló J., O'Hoy K. Myotonic dystrophy mutation: an unstable CTG repeat in the 3' untranslated region of the gene. Science. 1992 Mar 6;255(5049):1253–1255. doi: 10.1126/science.1546325. [DOI] [PubMed] [Google Scholar]
- Markel H. The stigma of disease: implications of genetic screening. Am J Med. 1992 Aug;93(2):209–215. doi: 10.1016/0002-9343(92)90052-d. [DOI] [PubMed] [Google Scholar]
- Ostrer H., Allen W., Crandall L. A., Moseley R. E., Dewar M. A., Nye D., McCrary S. V. Insurance and genetic testing: where are we now? Am J Hum Genet. 1993 Mar;52(3):565–577. [PMC free article] [PubMed] [Google Scholar]
- Rothstein Mark A. Genetic discrimination in employment and the Americans with Disabilities Act. Houst Law Rev. 1992 Spring;29(1):23–84. [PubMed] [Google Scholar]
- Singer Eleanor. Public attitudes toward genetic testing. Popul Res Policy Rev. 1991;10(3):235–255. doi: 10.1007/BF00141952. [DOI] [PubMed] [Google Scholar]
- Watson J. D. The human genome project: past, present, and future. Science. 1990 Apr 6;248(4951):44–49. doi: 10.1126/science.2181665. [DOI] [PubMed] [Google Scholar]
- Wilfond B. S., Fost N. The introduction of cystic fibrosis carrier screening into clinical practice: policy considerations. Milbank Q. 1992;70(4):629–659. [PubMed] [Google Scholar]
- Yarborough M., Scott J. A., Dixon L. K. The role of beneficence in clinical genetics: non-directive counseling reconsidered. Theor Med. 1989 Jun;10(2):139–149. doi: 10.1007/BF00539879. [DOI] [PubMed] [Google Scholar]