Implementing a Universal Informed Consent Process for the All of Us Research Program
Forthcoming, Pacific Symposium on Biocomputing, (Author Preprint)
12 Pages Posted: 27 Nov 2018
Date Written: July 27, 2018
The United States’ All of Us Research Program is a longitudinal research initiative with ambitious national recruitment goals, including of populations traditionally underrepresented in biomedical research, many of whom have high geographic mobility. The program has a distributed infrastructure, with key programmatic resources spread across the US. Given its planned duration and geographic reach both in terms of recruitment and programmatic resources, a diversity of state and territory laws might apply to the program over time as well as to the determination of participants’ rights. Here we present a listing and discussion of state and territory guidance and regulation of specific relevance to the program, and our approach to their incorporation within the program’s informed consent processes.
Keywords: informed consent, conflicts of law, choice of law, ELSI, bioethics
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