期刊
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
卷 6, 期 4, 页码 30-40出版社
SAGE PUBLICATIONS INC
DOI: 10.1525/jer.2011.6.4.30
关键词
cystic fibrosis; healthy volunteers; biobank; genetic research; qualitative data; return of results
资金
- National Human Genome Research Institute (NHGRI) [RC1HG005787, P50 HG004488]
IN THE DEBATE ABOUT WHETHER TO return individual genetic results to research participants, consideration of the nature of results has taken precedence over contextual factors associated with different study designs and populations. We conducted in-depth interviews with 24 individuals who participated in a genotype-driven study of cystic fibrosis: 9 of the individuals had cystic fibrosis, 15 had participated as healthy volunteers, and all had gene variants of interest to the researchers. These interviews revealed that the two groups had different ideas about the meaningfulness of genetic results. Our findings point to the importance of understanding research context, such as participants' relationship with the researcher and whether they have the disease condition under study, when considering whether to return individual results.
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