title: How does the collection of genetic test results affect research participants?
abstract: The collection of genetic test results has become routine in clinical research. Yet, there are few data on the impact of this practice. The present study provides the first empirical data that we are aware of on the impact this practice has on research participants. The findings suggest that collection of genetic test results in the research setting increases many individuals' desire to know the results themselves. Some respondents attributed this effect to the fact that the data existed, while others did not want investigators to have information about them that they did not possess. A smaller proportion of respondents assumed that investigators who had collected genetic test results would monitor their clinical significance over time. These respondents were less inclined to want to know their genetic test results once an investigator was aware of them. Investigators and IRBs should recognize these phenomena and address them in the design and conduct of studies which collect genetic information.
authors.affiliation: Department of Clinical Bioethics, NIH Clinical Center, National Institutes of Health, Bethesda, Maryland, USA. dwendler@nih.gov
authors.forename: David
authors.initials: D
authors.lastname: Wendler
authors.forename: Rebecca
authors.initials: R
authors.lastname: Pentz
mesh_terms: D000339:Affect; D003625:Data Collection; D032984:Ethics, Research; D036281:Genetic Research; D005820:Genetic Testing / Q000523:psychology*; D005826:Genetics, Medical; D006801:Humans; D012107:Research Design; D014342:Truth Disclosure