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

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

School of Engineering Design and Innovation

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution

21 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 language	English (US)
Title of host publication	Pacific Symposium on Biocomputing, PSB 2019
Editors	Russ B. Altman, A. Keith Dunker, Lawrence Hunter, Marylyn D. Ritchie, Teri E. Klein
Publisher	World Scientific
Pages	427-438
Number of pages	12
Volume	24
Edition	2019
ISBN (Electronic)	9789813279827
State	Published - 2019
Event	24th Pacific Symposium on Biocomputing, PSB 2019 - Kohala Coast, United States Duration: Jan 3 2019 → Jan 7 2019

Conference

Conference	24th Pacific Symposium on Biocomputing, PSB 2019
Country/Territory	United States
City	Kohala Coast
Period	1/3/19 → 1/7/19

All Science Journal Classification (ASJC) codes

Biomedical Engineering
Computational Theory and Mathematics

Cite this

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title = "Implementing a universal informed consent process for the All of Us Research Program",

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.",

author = "Megan Doerr and Shira Grayson and Sarah Moore and Christine Suver and John Wilbanks and Jennifer Wagner",

note = "Publisher Copyright: {\textcopyright} 2018 The Authors.; 24th Pacific Symposium on Biocomputing, PSB 2019 ; Conference date: 03-01-2019 Through 07-01-2019",

year = "2019",

language = "English (US)",

volume = "24",

pages = "427--438",

editor = "Altman, \{Russ B.\} and \{Keith Dunker\}, A. and Lawrence Hunter and Ritchie, \{Marylyn D.\} and Klein, \{Teri E.\}",

booktitle = "Pacific Symposium on Biocomputing, PSB 2019",

publisher = "World Scientific",

address = "United States",

edition = "2019",

}

Doerr, M, Grayson, S, Moore, S, Suver, C, Wilbanks, J & Wagner, J 2019, Implementing a universal informed consent process for the All of Us Research Program. in RB Altman, A Keith Dunker, L Hunter, MD Ritchie & TE Klein (eds), Pacific Symposium on Biocomputing, PSB 2019. 2019 edn, vol. 24, World Scientific, pp. 427-438, 24th Pacific Symposium on Biocomputing, PSB 2019, Kohala Coast, United States, 1/3/19.

Implementing a universal informed consent process for the All of Us Research Program. / Doerr, Megan; Grayson, Shira; Moore, Sarah et al.
Pacific Symposium on Biocomputing, PSB 2019. ed. / Russ B. Altman; A. Keith Dunker; Lawrence Hunter; Marylyn D. Ritchie; Teri E. Klein. Vol. 24 2019. ed. World Scientific, 2019. p. 427-438.

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution

TY - GEN

T1 - Implementing a universal informed consent process for the All of Us Research Program

AU - Doerr, Megan

AU - Grayson, Shira

AU - Moore, Sarah

AU - Suver, Christine

AU - Wilbanks, John

AU - Wagner, Jennifer

PY - 2019

Y1 - 2019

N2 - 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.

AB - 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.

UR - https://www.scopus.com/pages/publications/85062764734

UR - https://www.scopus.com/pages/publications/85062764734#tab=citedBy

M3 - Conference contribution

C2 - 30963079

AN - SCOPUS:85062764734

VL - 24

SP - 427

EP - 438

BT - Pacific Symposium on Biocomputing, PSB 2019

A2 - Altman, Russ B.

A2 - Keith Dunker, A.

A2 - Hunter, Lawrence

A2 - Ritchie, Marylyn D.

A2 - Klein, Teri E.

PB - World Scientific

T2 - 24th Pacific Symposium on Biocomputing, PSB 2019

Y2 - 3 January 2019 through 7 January 2019

ER -

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

Abstract

Conference

All Science Journal Classification (ASJC) codes

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