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.


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*