Abstract
OBJECTIVES: This study examined who participates in federal government advisory committees regarding public policy in human and medical genetics, what parties they represent, and to what extent the general public is meaningfully represented. METHODS: Analysis focused on 7 federal government documents published from January 1990 to February 1995. Advisors were categorized into 4 groups based on the professional affiliations that were listed in the publications. After a search of several references and data-bases, the study examined whether these individuals also had other affiliations not listed in the government publications. RESULTS: Individuals whose principal affiliations were with academia (n = 32; 44%) or industry (n = 19; 26%) represented nearly three fourths of the sample, followed by government employees (n = 13; 18%) and consumer advocates (n = 8; 11%). At least 16% of the advisors serving on the federal committees, mostly members of academia, had a dual affiliation. CONCLUSIONS: These data indicate that the public has modest representation on key federal advisory committees making policy recommendations regarding human genetics technology and clinical practice and that there is ample room for additional public participation.
Full Text
The Full Text of this article is available as a PDF (68.7 KB).
Selected References
These references are in PubMed. This may not be the complete list of references from this article.
- Casper B. M. Technology policy and democracy. Science. 1976 Oct 1;194(4260):29–35. doi: 10.1126/science.959841. [DOI] [PubMed] [Google Scholar]
- Collins F. S. Shattuck lecture--medical and societal consequences of the Human Genome Project. N Engl J Med. 1999 Jul 1;341(1):28–37. doi: 10.1056/NEJM199907013410106. [DOI] [PubMed] [Google Scholar]
- Epstein Steven. The construction of lay expertise: AIDS activism and the forging of credibility in the reform of clinical trials. Sci Technol Human Values. 1995 Autumn;20(4):408–437. doi: 10.1177/016224399502000402. [DOI] [PubMed] [Google Scholar]
- Geller Lisa N., Alper Joseph S., Billings Paul R., Barash Carol I., Beckwith Jonathan, Natowicz Marvin R. Individual, family, and societal dimensions of genetic discrimination: a case study analysis. Sci Eng Ethics. 1996 Jan;2(1):71–88. doi: 10.1007/BF02639319. [DOI] [PubMed] [Google Scholar]
- Heymann S. J. Patients in research: not just subjects, but partners. Science. 1995 Aug 11;269(5225):797–798. doi: 10.1126/science.7638595. [DOI] [PubMed] [Google Scholar]
- Hiller E. H., Landenburger G., Natowicz M. R. Public participation in medical policy-making and the status of consumer autonomy: the example of newborn-screening programs in the United States. Am J Public Health. 1997 Aug;87(8):1280–1288. doi: 10.2105/ajph.87.8.1280. [DOI] [PMC free article] [PubMed] [Google Scholar]
- Holman Halsted R., Dutton Diana B. A case for public participation in science policy formation and practice. South Calif Law Rev. 1978 Sep;51(6):1505–1534. [PubMed] [Google Scholar]
- Krimsky S., Rothenberg L. S., Stott P., Kyle G. Financial interests of authors in scientific journals: a pilot study of 14 publications. Sci Eng Ethics. 1996 Oct;2(4):395–410. doi: 10.1007/BF02583927. [DOI] [PubMed] [Google Scholar]
- Lappé Marc, Martin Patricia A. The place of the public in the conduct of science. South Calif Law Rev. 1978 Sep;51(6):1535–1554. [PubMed] [Google Scholar]
- Mittman Ilana Suez, Secundy Marion Gray. A national dialogue on genetics and minority issues. Community Genet. 1998;1(3):190–200. doi: 10.1159/000016162. [DOI] [PubMed] [Google Scholar]
- Natowicz Marvin R., Ard Catherine. The commercialization of clinical genetics: an analysis of interrelations between academic centers and for-profit clinical genetics diagnostics companies. J Genet Couns. 1997 Sep;6(3):337–355. doi: 10.1023/a:1025632423186. [DOI] [PubMed] [Google Scholar]
- Rodwin M. A. Patient accountability and quality of care: lessons from medical consumerism and the patients' rights, women's health and disability rights movements. Am J Law Med. 1994;20(1-2):147–167. [PubMed] [Google Scholar]