TY - JOUR
T1 - The Rise of Citizen Science in Health and Biomedical Research
AU - Wiggins, Andrea
AU - Wilbanks, John
N1 - Funding Information:
John Wilbanks served as a consultant to PatientsLikeMe in 2018 to advise on setting up an external Ethics and Compliance Advisory Board. His spouse was an employee at Facebook on the international policy team in 2017 and 2018, and they no longer hold any stock in the company. His work is funded in part by the AllofUs Research Program through a subcontract to Sage Bionetworks.
Funding Information:
This work was supported by a grant from the Robert Wood Johnson Foundation entitled “The Health Data Exploration (HDE) project” (PI: Patrick, #71693, 2013-2017), and an NIH grant “Addressing ELSI Issues in Unregulated Health Research Using Mobile Devices” (PI: Rothstein and Wilbanks, 1R01CA207538).
Publisher Copyright:
© 2019, © 2019 The author(s). Published with license by Taylor & Francis Group, LLC.
PY - 2019/8/3
Y1 - 2019/8/3
N2 - 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.
AB - 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.
KW - citizen science
KW - confidentiality and privacy
KW - participatory research
KW - professional–patient relationship
KW - research ethics
KW - social science research
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U2 - 10.1080/15265161.2019.1619859
DO - 10.1080/15265161.2019.1619859
M3 - Article
C2 - 31339831
AN - SCOPUS:85069628523
SN - 1526-5161
VL - 19
SP - 3
EP - 14
JO - American Journal of Bioethics
JF - American Journal of Bioethics
IS - 8
ER -