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- Title
Data Sharing in the Context of Health-Related Citizen Science.
- Authors
Majumder, Mary A.; McGuire, Amy L.; Rothstein, Mark A.; Wilbanks, John T.
- Abstract
As citizen science expands, questions arise regarding the applicability of norms and policies created in the context of conventional science. This article focuses on data sharing in the conduct of health-related citizen science, asking whether citizen scientists have obligations to share data and publish findings on par with the obligations of professional scientists. We conclude that there are good reasons for supporting citizen scientists in sharing data and publishing findings, and we applaud recent efforts to facilitate data sharing. At the same time, we believe it is problematic to treat data sharing and publication as ethical requirements for citizen scientists, especially where there is the potential for burden and harm without compensating benefit.
- Subjects
INFORMATION sharing; CITIZEN science; PUBLIC health research; GENETIC testing; ENVIRONMENTAL health research; MEDICAL research ethics; COMMUNICATION; DATABASE management; ENDOWMENT of research; MEDICAL ethics; PRIVACY; ACCESS to information; DATA security; DATA quality
- Publication
Journal of Law, Medicine & Ethics, 2020, Vol 48, p167
- ISSN
1073-1105
- Publication type
Article
- DOI
10.1177/1073110520917044