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J Law Med Ethics. 2015 Winter;43(4):897-903. doi: 10.1111/jlme.12327.

Citizen Science on Your Smartphone: An ELSI Research Agenda.

Author information

1
Herbert F. Boehl Chair of Law and Medicine and the Director of the Institute for Bioethics, Health Policy and Law at the University of Louisville School of Medicine.
2
Chief Commons Officer of Sage Bionetworks.
3
Assistant Professor of Pediatrics at the University of Louisville School of Medicine.

Abstract

The prospect of newly-emerging, technology-enabled, unregulated citizen science health research poses a substantial challenge for traditional research ethics. Unquestionably, a significant amount of research ethics study is needed to prepare for the inevitable, widespread introduction of citizen science health research. Using the case study of mobile health (mHealth) research, this article provides an ethical, legal, and social implications (ELSI) research agenda for citizen science health research conducted outside conventional research institutions. The issues for detailed analysis include the role of IRBs, recruitment, inclusion and exclusion criteria, informed consent, confidentiality and security, vulnerable participants, incidental findings, and publication and data sharing.

PMID:
26711425
DOI:
10.1111/jlme.12327
[Indexed for MEDLINE]

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