Journal
AMERICAN JOURNAL OF BIOETHICS
Volume 19, Issue 8, Pages 3-14Publisher
ROUTLEDGE JOURNALS, TAYLOR & FRANCIS LTD
DOI: 10.1080/15265161.2019.1619859
Keywords
citizen science; confidentiality and privacy; participatory research; professional-patient relationship; research ethics; social science research
Funding
- Robert Wood Johnson Foundation entitled The Health Data Exploration (HDE) project [71693]
- NIH grant Addressing ELSI Issues in Unregulated Health Research Using Mobile Devices [1R01CA207538]
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Citizen science models of public participation in scientific research represent a growing area of opportunity for health and biomedical research, as well as new impetus for more collaborative forms of engagement in large-scale research. However, this also surfaces a variety of ethical issues that both fall outside of and build upon the standard human subjects concerns in bioethics. This article provides background on citizen science, examples of current projects in the field, and discussion of established and emerging ethical issues for citizen science in health and biomedical research.
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