Literature DB >> 32342739

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

Susan M Wolf1.   

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.

Entities:  

Year:  2020        PMID: 32342739     DOI: 10.1177/1073110520917042

Source DB:  PubMed          Journal:  J Law Med Ethics        ISSN: 1073-1105            Impact factor:   1.718


  2 in total

1.  Ethical Considerations in Clinical Trials for Disorders of Consciousness.

Authors:  Michael J Young; Yelena G Bodien; Brian L Edlow
Journal:  Brain Sci       Date:  2022-02-02

2.  Returning individual research results in international direct-to-participant genomic research: results from a 31-country study.

Authors:  Michael Lang; Ma'n H Zawati
Journal:  Eur J Hum Genet       Date:  2022-04-28       Impact factor: 5.351

  2 in total

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