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
(1)
,
Lauren Robarts
,
Jonathan Roberts
,
Virginia Romano
,
Haytham A Sheerah
,
James Smith
,
Alexandra Soulier
(2, 3)
,
Claire Steed
,
Vigdis Stefànsdóttir
,
Cornelia Tandre
(3)
,
Adrian Thorogood
,
Torsten H Voigt
,
Nan Wang
,
Go Yoshizawa
,
Anna Middleton
Richard Milne
- Fonction : Auteur
- PersonId : 802771
- ORCID : 0000-0002-8770-2384
Katherine I Morley
- Fonction : Auteur
Mohamed A Almarri
- Fonction : Auteur
Jerome Atutornu
- Fonction : Auteur
Elena E Baranova
- Fonction : Auteur
Paul Bevan
- Fonction : Auteur
Maria Cerezo
- Fonction : Auteur
Yali Cong
- Fonction : Auteur
Alessia Costa
- Fonction : Auteur
Carolina Feijao
- Fonction : Auteur
Cláudia de Freitas
- Fonction : Auteur
Josepine Fernow
- Fonction : Auteur
Peter Goodhand
- Fonction : Auteur
Qurratulain Hasan
- Fonction : Auteur
Aiko Hibino
- Fonction : Auteur
Gry Houeland
- Fonction : Auteur
Heidi C Howard
- Fonction : Auteur
Zakir Hussain Sheikh
- Fonction : Auteur
Charlotta Ingvoldstad Malmgren
- Fonction : Auteur
Vera L Izhevskaya
- Fonction : Auteur
Aleksandra Jędrzejak
- Fonction : Auteur
Cao Jinhong
- Fonction : Auteur
Megumi Kimura
- Fonction : Auteur
Erika Kleiderman
- Fonction : Auteur
Keying Liu
- Fonction : Auteur
Deborah Mascalzoni
- Fonction : Auteur
Álvaro Mendes
- Fonction : Auteur
Jusaku Minari
- Fonction : Auteur
Dianne Nicol
- Fonction : Auteur
Emilia Niemiec
- Fonction : Auteur
Christine Patch
- Fonction : Auteur
Barbara Prainsack
- Fonction : Auteur
Lauren Robarts
- Fonction : Auteur
Jonathan Roberts
- Fonction : Auteur
Virginia Romano
- Fonction : Auteur
Haytham A Sheerah
- Fonction : Auteur
James Smith
- Fonction : Auteur
Alexandra Soulier
- Fonction : Auteur
- PersonId : 746692
- IdHAL : alexandra-soulier
- ORCID : 0000-0002-2365-1784
- IdRef : 130720690
Claire Steed
- Fonction : Auteur
Vigdis Stefànsdóttir
- Fonction : Auteur
Adrian Thorogood
- Fonction : Auteur
Torsten H Voigt
- Fonction : Auteur
Nan Wang
- Fonction : Auteur
Go Yoshizawa
- Fonction : Auteur
Anna Middleton
- Fonction : Auteur
- PersonId : 1211501
- ORCID : 0000-0003-3103-8098
Résumé
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.
Format du dépôt | Fichier |
---|---|
Type de dépôt | Article dans une revue |
Titre |
en
Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
|
Résumé |
en
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.
|
Auteur(s) |
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
1
, Lauren Robarts
, Jonathan Roberts
, Virginia Romano
, Haytham A Sheerah
, James Smith
, Alexandra Soulier
2, 3
, Claire Steed
, Vigdis Stefànsdóttir
, Cornelia Tandre
3
, Adrian Thorogood
, Torsten H Voigt
, Nan Wang
, Go Yoshizawa
, Anna Middleton
1
DILTEC -
DILTEC - Didactique des langues, des textes et des cultures - EA 2288
( 267720 )
- Université Sorbonne Nouvelle
Maison de la Recherche
Bureau A205
4, rue des Irlandais
75005 PARIS
- France
2
IHPST -
Institut d'Histoire et de Philosophie des Sciences et des Techniques
( 1064581 )
- 13, rue du Four 75006 PARIS
- France
3
Uppsala University
( 50873 )
- Box 256, SE-751 05 Uppsala
- Suède
|
Langue du document |
Anglais
|
Nom de la revue |
|
Vulgarisation |
Non
|
Comité de lecture |
Oui
|
Audience |
Internationale
|
Volume |
24
|
Numéro |
5
|
Page/Identifiant |
1120 - 1129
|
Date de publication |
2022
|
Domaine(s) |
|
Mots-clés |
en
Attitudes, Data donation, Genomics, International, Return of results
|
DOI | 10.1016/j.gim.2022.01.002 |
Fichier principal
2022 - Return old genomic results - perspectives across 22 countries.pdf ( 1.26 Mo
)
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Origine :
Publication financée par une institution
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