Protecting subjects' interests in genetics research
Language: 
English
Abstract: 

Biomedical researchers often assume that sponsors, subjects, families, and disease-associated advocacy groups contribute to research solely because of altruism. This view fails to capture the diverse interests of many participants in the emerging research enterprise. In the past two decades, patient groups have become increasingly active in the promotion and facilitation of genetics research. Simultaneously, a significant shift of academic biomedical science toward commercialization has occurred, spurred by U.S. federal policy changes. The concurrent rise in both the roles that subjects play and the commercial interests they have presents numerous ethical challenges. We examine the interests of different research participants, finding that these interests are not addressed by current policies and practices. We conclude that all participants should be given a voice in decisions affecting ownership, access to, and use of commercialized products and services, and that researchers and institutions should negotiate issues relating to control of research results and the sharing of benefits before the research is performed.

Author(s): 
Merz, Jon F.
Magnus, David
Cho, Mildred K.
Caplan, Arthur L.
Item Type: 
Journal Article
Publication Title: 
American Journal of Human Genetics
Journal Abbreviation: 
Am. J. Hum. Genet.
Publication Date: 
2002-04
Publication Year: 
2002
Pages: 
965-971
Volume: 
70
Issue: 
4
ISSN: 
0002-9297
DOI: 
10.1086/339767
Library Catalog: 
PubMed
Extra: 
PMID: 11870592 PMCID: PMC379126

Turabian/Chicago Citation

Jon F. Merz, David Magnus, Mildred K. Cho and Arthur L. Caplan. 2002-04. "Protecting subjects' interests in genetics research." American Journal of Human Genetics 70: 4: 965-971. 10.1086/339767.

Wikipedia Citation

<ref> {{Cite journal | doi = 10.1086/339767 | issn = 0002-9297 | volume = 70 | pages = 965-971 | last = Merz | first = Jon F. | coauthors = Magnus, David, Cho, Mildred K., Caplan, Arthur L. | title = Protecting subjects' interests in genetics research | journal = American Journal of Human Genetics | date = 2002-04 | pmid = | pmc = }} </ref>