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

Richard Milne; Katherine I. Morley; Mohamed A. Almarri; Jerome Atutornu; Elena E. Baranova; Paul Bevan; Maria Cerezo; Yali Cong; Alessia Costa; Carolina Feijao; Cláudia de Freitas; Josepine Fernow; Peter Goodhand; Qurratulain Hasan; Aiko Hibino; Gry Houeland; Heidi C. Howard; Zakir Hussain Sheikh; Charlotta Ingvoldstad Malmgren; Vera L. Izhevskaya; Aleksandra Jędrzejak; Cao Jinhong; Megumi Kimura; Erika Kleiderman; Keying Liu; Deborah Mascalzoni; Álvaro Mendes; Jusaku Minari; Dianne Nicol; Emilia Niemiec; Christine Patch; Barbara Prainsack; Marie Rivière; Lauren Robarts; Jonathan Roberts; Virginia Romano; Haytham A. Sheerah; James Smith; Alexandra Soulier; Claire Steed; Vigdis Stefànsdóttir; Cornelia Tandre; Adrian Thorogood; Torsten H. Voigt; Nan Wang; Go Yoshizawa; Anna Middleton

doi:10.1016/j.gim.2022.01.002

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

Richard Milne^*, Katherine I. Morley, Mohamed A. Almarri, Jerome Atutornu, Elena E. Baranova, Paul Bevan, Maria Cerezo, Yali Cong, Alessia Costa, Carolina Feijao, Cláudia de Freitas, Josepine Fernow, Peter Goodhand, Qurratulain Hasan, Aiko Hibino, Gry Houeland, Heidi C. Howard, Zakir Hussain Sheikh, Charlotta Ingvoldstad Malmgren, Vera L. IzhevskayaAleksandra Jędrzejak, Cao Jinhong, Megumi Kimura, Erika Kleiderman, Keying Liu, Deborah Mascalzoni, Álvaro Mendes, Jusaku Minari, Dianne Nicol, Emilia Niemiec, Christine Patch, Barbara Prainsack, Marie Rivière, Lauren Robarts, Jonathan Roberts, Virginia Romano, Haytham A. Sheerah, James Smith, Alexandra Soulier, Claire Steed, Vigdis Stefànsdóttir, Cornelia Tandre, Adrian Thorogood, Torsten H. Voigt, Nan Wang, Go Yoshizawa, Anna Middleton

^*Corresponding author for this work

Research output: Contribution to journal › Article › peer-review

3 Citations (Scopus)

Abstract

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.

Original language	English
Pages (from-to)	1120-1129
Number of pages	10
Journal	GENETICS IN MEDICINE
Volume	24
Issue number	5
Early online date	3 Feb 2022
DOIs	https://doi.org/10.1016/j.gim.2022.01.002
Publication status	Published - May 2022

Keywords

Attitudes
Data donation
Genomics
International
Return of results

Access to Document

10.1016/j.gim.2022.01.002

Cite this

Milne, R., Morley, K. I., Almarri, M. A., Atutornu, J., Baranova, E. E., Bevan, P., Cerezo, M., Cong, Y., Costa, A., Feijao, C., de Freitas, C., Fernow, J., Goodhand, P., Hasan, Q., Hibino, A., Houeland, G., Howard, H. C., Hussain Sheikh, Z., Malmgren, C. I., ... Middleton, A. (2022). Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries. GENETICS IN MEDICINE, 24(5), 1120-1129. https://doi.org/10.1016/j.gim.2022.01.002

@article{57489764f49b472285e677435981e863,

title = "Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries",

abstract = "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{\textquoteright} preferences for return of genomic results globally should be considered.",

keywords = "Attitudes, Data donation, Genomics, International, Return of results",

author = "Richard Milne and Morley, {Katherine I.} and Almarri, {Mohamed A.} and Jerome Atutornu and Baranova, {Elena E.} and Paul Bevan and Maria Cerezo and Yali Cong and Alessia Costa and Carolina Feijao and {de Freitas}, Cl{\'a}udia and Josepine Fernow and Peter Goodhand and Qurratulain Hasan and Aiko Hibino and Gry Houeland and Howard, {Heidi C.} and {Hussain Sheikh}, Zakir and Malmgren, {Charlotta Ingvoldstad} and Izhevskaya, {Vera L.} and Aleksandra J{\c e}drzejak and Cao Jinhong and Megumi Kimura and Erika Kleiderman and Keying Liu and Deborah Mascalzoni and {\'A}lvaro Mendes and Jusaku Minari and Dianne Nicol and Emilia Niemiec and Christine Patch and Barbara Prainsack and Marie Rivi{\`e}re and Lauren Robarts and Jonathan Roberts and Virginia Romano and Sheerah, {Haytham A.} and James Smith and Alexandra Soulier and Claire Steed and Vigdis Stef{\`a}nsd{\'o}ttir and Cornelia Tandre and Adrian Thorogood and Voigt, {Torsten H.} and Nan Wang and Go Yoshizawa and Anna Middleton",

note = "Funding Information: This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus. Funding Information: This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus. Conceptualisation: A.Mi.; Data Curation: P.B. J.S. C.S. L.R.; Formal Analysis: C.F. K.I.M. R.M.; Funding Acquisition: A.Mi. P.G. E.K.; Investigation: A.Mi. M.A.A. E.E.B. M.C. Y.C. J.F. G.H. Q.H. H.C.H. C.I.M. V.L.I. A.J. C.J. K.L. D.M. A.Me. J.M. D.N. E.N. B.P. M.R. V.R. H.A.S. A.S. V.S. C.T. T.H.V. N.W. G.Y.; Methodology: A.Mi. H.C.H. E.N.; Project Administration: L.R.; Resources: P.B. C.S. J.S.; Supervision: A.M.; Visualization: C.F. K.I.M.; Writing-original draft: R.M. A.M.; Writing-review and editing: A.Mi. J.A. A.C. C.d.F. A.H. H.C.H. M.K. D.M. A.Me. J.M. E.N. B.P. C.P. A.T. T.H.V. The online survey is fully anonymous. Participants are informed that their consent is given when they choose to click off the landing page and start answering the questions. On the landing page, the purpose of the project and what participation involves are explained, and participants have a choice at any stage within the survey to stop answering the questions and withdraw. The online project is physically based at the Wellcome Genome Campus with all data collected and stored in encrypted files at the Wellcome Sanger Institute in Cambridge. As part of the conditions of research delivery at this research institution the project passed ethical review by the Human Materials and Data Management Committee of the Wellcome Sanger Institute (Registration number: 16/029) as well as legal review to ensure that it was compliant with ethical and legal standards for participant involvement and data collection and storage. This ethics approval was sufficient to cover recruitment into the online survey for most of the collaborators attached to the project, with the exception of Australia, whereby the University of Tasmania required an additional local Institutional Review Board process to be completed in addition to their own separate consent form adding onto the landing page of the survey for Australian participants only. The study was approved by the Tasmanian Social Sciences Human Research Ethics Committee on the July 5, 2017 (reference number H0016682). This research conformed to the Declaration of Helsinki. Publisher Copyright: {\textcopyright} 2022 The Authors",

year = "2022",

month = may,

doi = "10.1016/j.gim.2022.01.002",

language = "English",

volume = "24",

pages = "1120--1129",

journal = "GENETICS IN MEDICINE",

issn = "1098-3600",

publisher = "LIPPINCOTT WILLIAMS & WILKINS",

number = "5",

}

Milne, R, Morley, KI, Almarri, MA, Atutornu, J, Baranova, EE, Bevan, P, Cerezo, M, Cong, Y, Costa, A, Feijao, C, de Freitas, C, Fernow, J, Goodhand, P, Hasan, Q, Hibino, A, Houeland, G, Howard, HC, Hussain Sheikh, Z, Malmgren, CI, Izhevskaya, VL, Jędrzejak, A, Jinhong, C, Kimura, M, Kleiderman, E, Liu, K, Mascalzoni, D, Mendes, Á, Minari, J, Nicol, D, Niemiec, E, Patch, C , Prainsack, B, Rivière, M, Robarts, L, Roberts, J, Romano, V, Sheerah, HA, Smith, J, Soulier, A, Steed, C, Stefànsdóttir, V, Tandre, C, Thorogood, A, Voigt, TH, Wang, N, Yoshizawa, G & Middleton, A 2022, 'Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries', GENETICS IN MEDICINE, vol. 24, no. 5, pp. 1120-1129. https://doi.org/10.1016/j.gim.2022.01.002

TY - JOUR

T1 - Return of genomic results does not motivate intent to participate in research for all

T2 - Perspectives across 22 countries

AU - Milne, Richard

AU - Morley, Katherine I.

AU - Almarri, Mohamed A.

AU - Atutornu, Jerome

AU - Baranova, Elena E.

AU - Bevan, Paul

AU - Cerezo, Maria

AU - Cong, Yali

AU - Costa, Alessia

AU - Feijao, Carolina

AU - de Freitas, Cláudia

AU - Fernow, Josepine

AU - Goodhand, Peter

AU - Hasan, Qurratulain

AU - Hibino, Aiko

AU - Houeland, Gry

AU - Howard, Heidi C.

AU - Hussain Sheikh, Zakir

AU - Malmgren, Charlotta Ingvoldstad

AU - Izhevskaya, Vera L.

AU - Jędrzejak, Aleksandra

AU - Jinhong, Cao

AU - Kimura, Megumi

AU - Kleiderman, Erika

AU - Liu, Keying

AU - Mascalzoni, Deborah

AU - Mendes, Álvaro

AU - Minari, Jusaku

AU - Nicol, Dianne

AU - Niemiec, Emilia

AU - Patch, Christine

AU - Prainsack, Barbara

AU - Rivière, Marie

AU - Robarts, Lauren

AU - Roberts, Jonathan

AU - Romano, Virginia

AU - Sheerah, Haytham A.

AU - Smith, James

AU - Soulier, Alexandra

AU - Steed, Claire

AU - Stefànsdóttir, Vigdis

AU - Tandre, Cornelia

AU - Thorogood, Adrian

AU - Voigt, Torsten H.

AU - Wang, Nan

AU - Yoshizawa, Go

AU - Middleton, Anna

N1 - Funding Information: This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus. Funding Information: This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus. Conceptualisation: A.Mi.; Data Curation: P.B. J.S. C.S. L.R.; Formal Analysis: C.F. K.I.M. R.M.; Funding Acquisition: A.Mi. P.G. E.K.; Investigation: A.Mi. M.A.A. E.E.B. M.C. Y.C. J.F. G.H. Q.H. H.C.H. C.I.M. V.L.I. A.J. C.J. K.L. D.M. A.Me. J.M. D.N. E.N. B.P. M.R. V.R. H.A.S. A.S. V.S. C.T. T.H.V. N.W. G.Y.; Methodology: A.Mi. H.C.H. E.N.; Project Administration: L.R.; Resources: P.B. C.S. J.S.; Supervision: A.M.; Visualization: C.F. K.I.M.; Writing-original draft: R.M. A.M.; Writing-review and editing: A.Mi. J.A. A.C. C.d.F. A.H. H.C.H. M.K. D.M. A.Me. J.M. E.N. B.P. C.P. A.T. T.H.V. The online survey is fully anonymous. Participants are informed that their consent is given when they choose to click off the landing page and start answering the questions. On the landing page, the purpose of the project and what participation involves are explained, and participants have a choice at any stage within the survey to stop answering the questions and withdraw. The online project is physically based at the Wellcome Genome Campus with all data collected and stored in encrypted files at the Wellcome Sanger Institute in Cambridge. As part of the conditions of research delivery at this research institution the project passed ethical review by the Human Materials and Data Management Committee of the Wellcome Sanger Institute (Registration number: 16/029) as well as legal review to ensure that it was compliant with ethical and legal standards for participant involvement and data collection and storage. This ethics approval was sufficient to cover recruitment into the online survey for most of the collaborators attached to the project, with the exception of Australia, whereby the University of Tasmania required an additional local Institutional Review Board process to be completed in addition to their own separate consent form adding onto the landing page of the survey for Australian participants only. The study was approved by the Tasmanian Social Sciences Human Research Ethics Committee on the July 5, 2017 (reference number H0016682). This research conformed to the Declaration of Helsinki. Publisher Copyright: © 2022 The Authors

PY - 2022/5

Y1 - 2022/5

N2 - 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.

AB - 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.

KW - Attitudes

KW - Data donation

KW - Genomics

KW - International

KW - Return of results

UR - http://www.scopus.com/inward/record.url?scp=85124015446&partnerID=8YFLogxK

U2 - 10.1016/j.gim.2022.01.002

DO - 10.1016/j.gim.2022.01.002

M3 - Article

AN - SCOPUS:85124015446

SN - 1098-3600

VL - 24

SP - 1120

EP - 1129

JO - GENETICS IN MEDICINE

JF - GENETICS IN MEDICINE

IS - 5

ER -

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

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