Abstract
The federally funded Human Genome Initiative will lead to the development of new capabilities to learn about an individual's genetic status. Legal issues are raised concerning patients' and other parties' access to that information. This article discusses the effect of existing statutes and case law on three pivotal questions: To what sort of information are people entitled? What control should people have over their genetic information? Do people have a right to refuse genetic information? The article emphasizes that the law protects a patient's right to obtain or refuse genetic information about oneself, as well as the right to control the dissemination of that information to others.
Full text
PDF
Selected References
These references are in PubMed. This may not be the complete list of references from this article.
- Andrews L. B. Informed consent statutes and the decisionmaking process. J Leg Med. 1984 Jun;5(2):163–217. doi: 10.1080/01947648409513408. [DOI] [PubMed] [Google Scholar]
- Berg D., Hirsh H. L. Duty to recall. South Med J. 1980 Aug;73(8):1041-3, 1045. doi: 10.1097/00007611-198008000-00025. [DOI] [PubMed] [Google Scholar]
- Calabrese E. J. Ecogenetics: historical foundation and current status. J Occup Med. 1986 Oct;28(10):1096–1102. doi: 10.1097/00043764-198610000-00034. [DOI] [PubMed] [Google Scholar]
- Farrer L. A. Suicide and attempted suicide in Huntington disease: implications for preclinical testing of persons at risk. Am J Med Genet. 1986 Jun;24(2):305–311. doi: 10.1002/ajmg.1320240211. [DOI] [PubMed] [Google Scholar]
- Fletcher John C. Where in the world are we going with the new genetics? J Contemp Health Law Policy. 1989 Spring;5:33–51. [PubMed] [Google Scholar]
- Goodman M. J., Goodman L. E. The ovrselling of genetic anxiety. Hastings Cent Rep. 1982 Oct;12(5):20–27. [PubMed] [Google Scholar]
- Gusella J. F., Wexler N. S., Conneally P. M., Naylor S. L., Anderson M. A., Tanzi R. E., Watkins P. C., Ottina K., Wallace M. R., Sakaguchi A. Y. A polymorphic DNA marker genetically linked to Huntington's disease. Nature. 1983 Nov 17;306(5940):234–238. doi: 10.1038/306234a0. [DOI] [PubMed] [Google Scholar]
- MABRY C. C., DENNISTON J. C., NELSON T. L., SON C. D. MATERNAL PHENYLKETONURIA. A CAUSE OF MENTAL RETARDATION IN CHILDREN WITHOUT THE METABOLIC DEFECT. N Engl J Med. 1963 Dec 26;269:1404–1408. doi: 10.1056/NEJM196312262692604. [DOI] [PubMed] [Google Scholar]
- New York City Bar Association. Committee on Medicine and Law Death with dignity. Rec Assoc Bar City New York. 1977 Mar;32(3):119–123. [PubMed] [Google Scholar]
- Roberts L. To test or not to test? Science. 1990 Jan 5;247(4938):17–19. doi: 10.1126/science.2294585. [DOI] [PubMed] [Google Scholar]
- Ryder L. P., Svejgaard A., Dausset J. Genetics of HLA disease association. Annu Rev Genet. 1981;15:169–187. doi: 10.1146/annurev.ge.15.120181.001125. [DOI] [PubMed] [Google Scholar]
- Shaw M. W. Conditional prospective rights of the fetus. J Leg Med. 1984 Mar;5(1):63–116. doi: 10.1080/01947648409513403. [DOI] [PubMed] [Google Scholar]
- Wexler N. S. Genetic jeopardy and the new clairvoyance. Prog Med Genet. 1985;6:277–304. [PubMed] [Google Scholar]