Journal
JOURNAL OF EMPIRICAL RESEARCH ON HUMAN RESEARCH ETHICS
Volume 6, Issue 4, Pages 21-29Publisher
UNIV CALIFORNIA PRESS
DOI: 10.1525/jer.2011.6.4.21
Keywords
research recruitment; research participants; disclosure of research results; genetic research; research participants; genetic results
Categories
Funding
- National Human Genome Research Institute (NHGRI) [RC1HG005787]
Ask authors/readers for more resources
BETTER UNDERSTANDING OF HOW research participants with a known condition ascribe meaning to individual genetic results is important to help researchers and institutional review boards evaluate the potential benefits and harms of disclosing results in the context of genotype-driven research recruitment. Based on 29 in-depth interviews with epilepsy patients participating in a genetic study, we found that this population of research subjects anticipated that genetic research results would provide answers to a range of questions about the research process and their condition. Their multi-layered interpretations underscore the need for clear communication about the nature and limitations of results if individual or aggregate genetic results are returned in the process of recruitment for additional research.
Authors
I am an author on this paper
Click your name to claim this paper and add it to your profile.
Reviews
Recommended
No Data Available