Citizen Science on Your Smartphone: An ELSI Research Agenda

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 sci...

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Bibliographic Details
Published inThe Journal of law, medicine & ethics Vol. 43; no. 4; pp. 897 - 903
Main Authors Rothstein, Mark A., Wilbanks, John T., Brothers, Kyle B.
Format Journal Article
LanguageEnglish
Published United States Blackwell Publishing Ltd 01.12.2015
Subjects
Biomedical Research - ethics
Biomedical Research - legislation & jurisprudence
Humans
Informed Consent
Mobile Applications
Research Subjects
Smartphone
Telemedicine
Online AccessGet full text
ISSN1073-1105
1748-720X
1748-720X
DOI10.1111/jlme.12327

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Summary: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.
Bibliography:ark:/67375/WNG-0QDR7QQM-W
ArticleID:JLME12327
istex:13D813C84EAD325F3DA6C3B1BE982B55A4836344
ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
content type line 23
ISSN:1073-1105
1748-720X
1748-720X
DOI:10.1111/jlme.12327