Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries - Archive ouverte HAL Access content directly
Journal Articles Genetics in Medicine Year : 2022

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

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

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.
Fichier principal
Vignette du fichier
2022 - Return old genomic results - perspectives across 22 countries.pdf (1.26 Mo) Télécharger le fichier
Origin : Publication funded by an institution

Dates and versions

halshs-03921922 , version 1 (04-01-2023)

Identifiers

Cite

Richard Milne, Katherine I Morley, Mohamed A Almarri, Jerome Atutornu, Elena E Baranova, et al.. Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries. Genetics in Medicine, 2022, 24 (5), pp.1120 - 1129. ⟨10.1016/j.gim.2022.01.002⟩. ⟨halshs-03921922⟩
3 View
0 Download

Altmetric

Share

Gmail Facebook Twitter LinkedIn More