title: Experiences and attitudes of genome investigators regarding return of individual genetic test results.
abstract: OBJECTIVE
  Whether and how to return individual genetic results to study participants is among the most contentious policy issues in contemporary genomic research.
  
  
  METHODS
  We surveyed corresponding authors of genome-wide association studies, identified through the National Human Genome Research Institute's Catalog of Published Genome-Wide Association Studies, to describe the experiences and attitudes of these stakeholders.
  
  
  RESULTS
  Of 357 corresponding authors, 200 (56%) responded. One hundred twenty-six (63%) had been responsible for primary data and sample collection, whereas 74 (37%) had performed secondary analyses. Only 7 (4%) had returned individual results within their index genome-wide association studies. Most (69%) believed that return of results to individual participants was warranted under at least some circumstances. Most respondents identified a desire to benefit participants' health (63%) and respect for participants' desire for information (57%) as major motivations for returning results. Most also identified uncertain clinical utility (76%), the possibility that participants will misunderstand results (74%), the potential for emotional harm (61%), the need to ensure access to trained clinicians (59%), and the potential for loss of confidentiality (51%) as major barriers to return of results.
  
  
  CONCLUSIONS
  Investigators have limited experience returning individual results from genome-scale research, yet most are motivated to do so in at least some circumstances.
authors: Center for Biomedical Informatics, Harvard Medical School, Boston, Massachusetts, USA.
authors: Rachel B
authors: RB
authors: Ramoni
authors: Amy L
authors: AL
authors: McGuire
authors: Jill Oliver
authors: JO
authors: Robinson
authors: Debra S
authors: DS
authors: Morley
authors: Sharon E
authors: SE
authors: Plon
authors: Steven
authors: S
authors: Joffe
mesh_terms: D022126:Access to Information; D001290:Attitude; D003625:Data Collection; D036281:Genetic Research; D005820:Genetic Testing / Q000941:ethics; D055106:Genome-Wide Association Study; D006801:Humans; D033162:Incidental Findings; D009042:Motivation; D054560:National Human Genome Research Institute (U.S.); D012108:Research Personnel / Q000941:ethics / Q000523:psychology; D014481:United States
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