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American Journal of Bioethics.

Mind the Gap: The Ethics Void Created by the Rise of Citizen Science in Health and Biomedical Research

The target article by Wiggins and Wilbanks reports on the history and typology of the models of citizen science emerging in health and biomedical research with the rapid dispersion and repurposing of technology. Wiggins and Wilbanks describe the variety of models through which nonprofessionals collaborate in the generation of health and biomedical knowledge, and highlight the benefits of these citizen science models.

It is inspiring to see the power of citizen science recognized. Wiggins and Wilbanks argue that the benefits can be substantial, acknowledging patient communities’ ability to identify interesting and highly relevant questions, accelerate the pace of research and new knowledge, and engage research participants in highly effective ways. However, the breadth of the “ethics gap” Wiggins and Wilbanks describe is alarming. Legal and regulatory protections for the patients championing this new field of health and biomedical research have not kept pace with the transition of the science—and risk—out of the clinic and into the hands of individuals.

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Volume 19, Issue 8
July 2019

Target Articles.