Consent Processes for Mobile App Mediated Research: Systematic Review

JMIR Mhealth Uhealth, 2017,5(8)

Posted: 29 Mar 2018

See all articles by Sarah Moore

Sarah Moore

Sage Bionetworks

Anne-Marie Tassé

McGill University - Centre for Genomics and Policy

Adrian Thorogood

McGill University - Centre for Genomics and Policy

Ingrid Winship

University of Melbourne

Ma'n H. Zawati

McGill University - Centre of Genomics and Policy

Megan Doerr

Sage Bionetworks

Multiple version iconThere are 2 versions of this paper

Date Written: August 30, 2017

Abstract

Background: Since the launch of ResearchKit on the iOS platform in March 2015 and ResearchStack on the Android platform in June 2016, many academic and commercial institutions around the world have adapted these frameworks to develop mobile app-based research studies. These studies cover a wide variety of subject areas including melanoma, cardiomyopathy, and autism. Additionally, these app-based studies target a variety of participant populations, including children and pregnant women.

Objective: The aim of this review was to document the variety of self-administered remote informed consent processes used in app-based research studies available between May and September 2016. Remote consent is defined as any consenting process with zero in-person steps, when a participant is able to join a study without ever seeing a member of the research team. This type of review has not been previously conducted. The research community would benefit from a rigorous interrogation of the types of consent taken as part of the seismic shift to entirely mobile meditated research studies.

Methods: This review examines both the process of information giving and specific content shared, with special attention to data privacy, aggregation, and sharing.

Results: Consistency across some elements of the app-based consent processes was found; for example, informing participants about how data will be curated from the phone. Variations in other elements were identified; for example, where specific information is shared and the level of detail disclosed. Additionally, several novel elements present in eConsent not typically seen in traditional consent for research were highlighted.

Conclusions: This review advocates the importance of participant informedness in a novel and largely unregulated research setting.

Keywords: mHealth, Informed Consent, Smartphone, Cell Phone, Mobile Applications, Privacy, Research Ethics

Suggested Citation

Moore, Sarah and Tassé, Anne-Marie and Thorogood, Adrian and Winship, Ingrid and Zawati, Ma'n H. and Doerr, Megan, Consent Processes for Mobile App Mediated Research: Systematic Review (August 30, 2017). JMIR Mhealth Uhealth, 2017,5(8), Available at SSRN: https://ssrn.com/abstract=3152470

Sarah Moore

Sage Bionetworks ( email )

1100 Fairview Ave. N.
Mailstop M1-C108
Seattle, WA 98109
United States

Anne-Marie Tassé

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Adrian Thorogood

McGill University - Centre for Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Ingrid Winship

University of Melbourne ( email )

185 Pelham Street
Carlton, Victoria 3053
Australia

Ma'n H. Zawati (Contact Author)

McGill University - Centre of Genomics and Policy ( email )

740 Dr. Penfield Avenue, Suite 5200
Montreal, Quebec H3A 0G1
Canada

Megan Doerr

Sage Bionetworks ( email )

1100 Fairview Ave. N.
Mailstop M1-C108
Seattle, WA 98109
United States

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