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

Research output: Contribution to journalArticlepeer-review

2 Scopus citations

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.

Original languageEnglish (US)
Pages (from-to)159-166
Number of pages8
JournalJournal of Law, Medicine and Ethics
Volume48
Issue number1_suppl
DOIs
StatePublished - Mar 1 2020

Bibliographical note

Funding Information:
Preparation of this article was funded in part by National Human Genome Research Institute (NHGRI), National Cancer Institute (NCI), and Office of the Director grant #R01CA207538 (Rothstein, Wilbanks, PIs) on “Addressing Ethical, Legal, and Social Issues (ELSI) in Unregulated Health Research Using Mobile Devices” and by NHGRI and NCI grant #1R01HG008605 (Wolf, Clayton, Lawrenz, PIs), on “LawSeq: Building a Sound Legal Foundation for Translating Genomics into Clinical Application.” The views expressed in this article are those of the author and not necessarily those of the funders.

Publisher Copyright:
© 2020 American Society of Law, Medicine & Ethics.

PubMed: MeSH publication types

  • Journal Article
  • Research Support, N.I.H., Extramural

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