Epilepsy patient-participants and genetic research results as "answers".
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.
Duke Institute for Genome Sciences & Policy, Duke University, Durham, NC 27710, USa. enamey@ gmail.com
Emily E
EE
Namey
Laura M
LM
Beskow
D000328:Adult; D000368:Aged; D003142:Communication; D032882:Comprehension; D030881:Disclosure / Q000941:ethics*; D004827:Epilepsy; D028744:Ethics Committees, Research / Q000941:ethics; D005260:Female; D036281:Genetic Research / Q000941:ethics*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D035842:Research Subjects; D055815:Young Adult