Return of Results in Participant-Driven Research: Learning from Transformative Research Models

Journal of Law, Medicine and Ethics 48 (S1):159-166 (2020)
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Abstract

Participant-driven research is a burgeoning domain of research innovation, often facilitated by mobile technologies. Return of results and data are common hallmarks, grounded in transparency and data democracy. PDR has much to teach traditional research about these practices and successful engagement. Recommendations calling for new state laws governing research with mHealth modalities common in PDR and federal creation of review mechanisms, threaten to stifle valuable participant-driven innovation, including in return of results.

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Susan Wolf
University of North Carolina, Chapel Hill

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