Citizen Science on Your Smartphone: An ELSI Research Agenda

Journal of Law, Medicine & Ethics 43(4) (2015)

7 Pages Posted: 19 Nov 2015 Last revised: 25 Apr 2016

Mark A. Rothstein

University of Louisville - Institute for Bioethics, Health Policy, and Law; University of Louisville - Louis D. Brandeis School of Law

John Wilbanks

Ewing Marion Kauffman Foundation; Sage Bionetworks

Kyle Brothers

University of Louisville - School of Medicine

Date Written: November 17, 2015

Abstract

Widespread adoption of medical applications for smartphones has expanded the range of health data measurement by individuals. As a result, citizen science health research – research designed and carried out by nonprofessionals – is increasingly likely. With only a few exceptions, this research is unregulated at the federal or state level, and therefore raises traditional concerns about independent review, informed consent, privacy, and other issues. This article proposes a research agenda to study the ethical, legal, and social implications (ELSI) of citizen science health research.

Keywords: Citizen science, Common Rule, ELSI, FDA, Health research, IRBs, Mobile health, Smartphones

JEL Classification: K31, K32

Suggested Citation

Rothstein, Mark A. and Wilbanks, John and Brothers, Kyle, Citizen Science on Your Smartphone: An ELSI Research Agenda (November 17, 2015). Journal of Law, Medicine & Ethics 43(4) (2015). Available at SSRN: https://ssrn.com/abstract=2692204

Mark A. Rothstein (Contact Author)

University of Louisville - Institute for Bioethics, Health Policy, and Law ( email )

Louisville, KY 40202
United States

HOME PAGE: http://www.louisville.edu/bioethics

University of Louisville - Louis D. Brandeis School of Law ( email )

Wilson W. Wyatt Hall
Louisville, KY 40292
United States

John Wilbanks

Ewing Marion Kauffman Foundation ( email )

4801 Rockhill Road
Kansas City, MO 64110-2046
United States

Sage Bionetworks ( email )

1100 Fairview Ave. North
Seattle, WA 98109
United States

Kyle Brothers

University of Louisville - School of Medicine ( email )

Louisville, KY
United States

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