Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
Journal article, 2022

Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed the “Your DNA, Your Say” online survey of public perspectives on genomic data sharing including responses from 36,268 individuals across 22 low-, middle-, and high-income countries, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people's intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered.

Data donation

International

Genomics

Attitudes

Return of results

Author

Richard Milne

University of Cambridge

Engagement and Society

Katherine I. Morley

RAND Corporation

University of Melbourne

King's College London

Mohamed A. Almarri

Wellcome Trust Sanger Institute

Dubai eGovernment, Dubai Police

Jerome Atutornu

Engagement and Society

Elena E. Baranova

Russian Medical Academy of Continuous Professional Education

Paul Bevan

Wellcome Trust Sanger Institute

Maria Cerezo

European Bioinformatics Institute

Yali Cong

Peking University Health Science Center

Alessia Costa

Engagement and Society

Carolina Feijao

RAND Corporation

Cláudia de Freitas

Laboratório para a Investigação Integrativa e Translacional em Saúde Populacional (ITR)

University of Porto

Josepine Fernow

Uppsala University

Peter Goodhand

Ontario Institute for Cancer Research

Qurratulain Hasan

Kamineni Hospital

SAAZ Genetics

Aiko Hibino

Hirosaki University

Gry Houeland

Uppsala University

Heidi Howard

Lund University

Chalmers, Biology and Biological Engineering, Industrial Biotechnology

Zakir Hussain Sheikh

SAAZ Genetics

Charlotta Ingvoldstad Malmgren

Karolinska Institutet

Institutionen för folkhälso- och vårdvetenskap

Vera L. Izhevskaya

Research Centre for Medical Genetics

Aleksandra Jędrzejak

Independent Scholar

Cao Jinhong

Wuhan University

Megumi Kimura

Hitotsubashi University

Erika Kleiderman

McGill Faculty of Medicine and Health Sciences

Keying Liu

Peking University Health Science Center

Osaka University

Deborah Mascalzoni

Uppsala University

EURAC Research, Institute for Biomedicine

Alvaro Mendes

Instituto de Biologia Molecular e Celular

Jusaku Minari

Uehiro Research Division for iPS Cell Ethics

Dianne Nicol

University of Tasmania

Emilia Niemiec

Lund University

Christine Patch

Queen Mary University of London

Engagement and Society

Barbara Prainsack

University of Vienna

King's College London

Marie Rivière

Universite de la Sorbonne Nouvelle Paris III

Lauren Robarts

Engagement and Society

Jonathan Roberts

Engagement and Society

Virginia Romano

Uppsala University

EURAC Research, Institute for Biomedicine

Haytham A. Sheerah

Osaka University

James Smith

Wellcome Trust Sanger Institute

Alexandra Soulier

Uppsala University

Claire Steed

Wellcome Trust Sanger Institute

Vigdis Stefansdottir

Landspitali University Hospital

Cornelia Tandre

Uppsala University

Adrian Thorogood

University of Luxembourg

McGill Faculty of Medicine and Health Sciences

Torsten H. Voigt

RWTH Aachen University

Nan Wang

Peking University Health Science Center

Go Yoshizawa

Arbeidsforskningsinstituttet

Anna Middleton

Engagement and Society

The Faculty of Education

Genetics in Medicine

1098-3600 (ISSN) 1530-0366 (eISSN)

Vol. In Press

Subject Categories

Other Health Sciences

Economics

Public Health, Global Health, Social Medicine and Epidemiology

DOI

10.1016/j.gim.2022.01.002

PubMed

35125311

More information

Latest update

4/6/2022 2