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
Date Written: November 17, 2015
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: Suggested Citation