Most Research Participants Not Concerned About Data Sharing

Ninety-three percent were very or somewhat likely to allow their data to be shared with university scientists.
Ninety-three percent were very or somewhat likely to allow their data to be shared with university scientists.

HealthDay News — Few participants in clinical trials have strong concerns about the risks of data sharing, according to a study published June 7 in the New England Journal of Medicine.

Michelle M. Mello, JD, PhD, from Stanford University in California, and colleagues conducted a structured survey of 771 current and recent participants from a diverse sample of clinical trials at 3 US academic medical centers. The survey was distributed by mail (350 completed surveys) and in clinic waiting rooms (421 completed surveys). 

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The researchers found that fewer than 8% of respondents felt that the potential negative consequences of data sharing outweighed the benefits. The vast majority (93%) were very or somewhat likely to allow their own data to be shared with university scientists, while slightly fewer (82%) were very or somewhat likely to share with scientists in for-profit companies. Expressed concerns included: that data sharing might make others less willing to enroll in clinical trials (37% very or somewhat concerned), that data would be used for marketing purposes (34%), or that data could be stolen (30%). Discrimination and exploitation for profit were less often reported as concerns (22 and 20%, respectively).

"Provided that adequate security safeguards were in place, most participants were willing to share their data for a wide range of uses," conclude the authors.

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