TY - JOUR
T1 - Return of Results in Participant-Driven Research
T2 - Learning from Transformative Research Models
AU - Wolf, Susan M.
N1 - Publisher Copyright:
© 2020 American Society of Law, Medicine & Ethics.
PY - 2020/3/1
Y1 - 2020/3/1
N2 - 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.
AB - 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.
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U2 - 10.1177/1073110520917042
DO - 10.1177/1073110520917042
M3 - Article
C2 - 32342739
AN - SCOPUS:85084169522
SN - 1073-1105
VL - 48
SP - 159
EP - 166
JO - Journal of Law, Medicine and Ethics
JF - Journal of Law, Medicine and Ethics
IS - 1_suppl
ER -