Clinical Trial Participants' Views of the Risks and Benefits of Data Sharing.

ABSTRACT: Background Sharing of participant-level clinical trial data has potential benefits, but concerns about potential harms to research participants have led some pharmaceutical sponsors and investigators to urge caution. Little is known about clinical trial participants' perceptions of the risks of data sharing. Methods We conducted a structured survey of 771 current and recent participants from a diverse sample of clinical trials at three academic medical centers in the United States. Surveys were distributed by mail (350 completed surveys) and in clinic waiting rooms (421 completed surveys) (overall response rate, 79%). Results Less than 8% of respondents felt that the potential negative consequences of data sharing outweighed the benefits. A total of 93% were very or somewhat likely to allo

SUBMITTER: Mello MM 

PROVIDER: S-EPMC6057615 | biostudies-literature | 2018 Jun

REPOSITORIES: biostudies-literature