Implementing a universal informed consent process for the All of Us Research Program

Megan Doerr, Shira Grayson, Sarah Moore, Christine Suver, John Wilbanks, Jennifer Wagner

Research output: Contribution to journalConference articlepeer-review

8 Scopus citations

Abstract

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.

Original languageEnglish (US)
Pages (from-to)427-438
Number of pages12
JournalPacific Symposium on Biocomputing
Volume24
Issue number2019
StatePublished - 2019
Event24th Pacific Symposium on Biocomputing, PSB 2019 - Kohala Coast, United States
Duration: Jan 3 2019Jan 7 2019

All Science Journal Classification (ASJC) codes

  • Biomedical Engineering
  • Computational Theory and Mathematics

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