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

Susan M Wolf

doi:10.1177/1073110520917042

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

J Law Med Ethics. 2020 Mar;48(1_suppl):159-166. doi: 10.1177/1073110520917042.

Author

Susan M Wolf¹

Affiliation

¹ Susan M. Wolf, J.D., is McKnight Presidential Professor of Law, Medicine & Public Policy; Faegre Baker Daniels Professor of Law; and Professor of Medicine at the University of Minnesota. She chairs the University's Consortium on Law and Values in Health, Environment & the Life Sciences.

PMID: 32342739
DOI: 10.1177/1073110520917042

Abstract

Participant-driven research (PDR) is a burgeoning domain of research innovation, often facilitated by mobile technologies (mHealth). 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.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Biomedical Research / trends
Data Collection / methods*
Humans
Mobile Applications*
Patient Access to Records / ethics*
Patient Access to Records / legislation & jurisprudence*
Patient Access to Records / trends*
Research Design / trends
Telemedicine*

Grants and funding

R01 CA207538/CA/NCI NIH HHS/United States