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Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries

Authors :
Qurratulain Hasan
Heidi C. Howard
Richard Milne
Lauren Robarts
Jack Pollard
Vigdis Stefansdottir
Vera L. Izhevskaya
Cornelia Tandre
Alexandra Soulier
Jerome Atutornu
Virginia Romano
Claire Steed
Megumi Kimura
Jonathan Roberts
Marie Rivière
Peter Goodhand
A. P. Costa
Charlotta Ingvoldstad Malmgren
Go Yoshizawa
Adrian Thorogood
Josepine Fernow
Aleksandra Jędrzejak
Brandi Leach
Torsten Heinemann
Deborah Mascalzoni
Haytham A. Sheerah
Christine Critchley
Anne V. West
Paul Bevan
Shamim Anwer
Emilia Niemiec
Maria Cerezo
Mohamed A. Almarri
Elena E. Baranova
Yali Cong
Keying Liu
Nan Wang
Erika Kleiderman
Christine Patch
Dianne Nicol
Aiko Hibino
Álvaro Mendes
Katherine I. Morley
Cao Jinhong
Gry Houeland
Jusaku Minari
S. Zakir Hussain
James Smith
Anna Middleton
Barbara Prainsack
Institut d'Histoire et de Philosophie des Sciences et des Techniques (IHPST)
Université Paris 1 Panthéon-Sorbonne (UP1)-Centre National de la Recherche Scientifique (CNRS)
DILTEC - Didactique des langues, des textes et des cultures - EA 2288 (DILTEC)
Université Sorbonne Nouvelle - Paris 3
Milne, Richard [0000-0002-8770-2384]
Apollo - University of Cambridge Repository
Source :
Genome Medicine, Genome Medicine, BioMed Central, 2021, 13, pp.92. ⟨10.1186/s13073-021-00903-0⟩, Genome Medicine, BioMed Central, 2021, 13 (1), ⟨10.1186/s13073-021-00903-0⟩, Genome medicine 13, 92 (2021). doi:10.1186/s13073-021-00903-0, Genome Medicine, Vol 13, Iss 1, Pp 1-12 (2021)
Publication Year :
2021
Publisher :
Springer Science and Business Media LLC, 2021.

Abstract

Background Public trust is central to the collection of genomic and health data and the sustainability of genomic research. To merit trust, those involved in collecting and sharing data need to demonstrate they are trustworthy. However, it is unclear what measures are most likely to demonstrate this. Methods We analyse 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, gathered in 15 languages. We examine how participants perceived the relative value of measures to demonstrate the trustworthiness of those using donated DNA and/or medical information. We examine between-country variation and present a consolidated ranking of measures. Results Providing transparent information about who will benefit from data access was the most important measure to increase trust, endorsed by more than 50% of participants across 20 of 22 countries. It was followed by the option to withdraw data and transparency about who is using data and why. Variation was found for the importance of measures, notably information about sanctions for misuse of data—endorsed by 5% in India but almost 60% in Japan. A clustering analysis suggests alignment between some countries in the assessment of specific measures, such as the UK and Canada, Spain and Mexico and Portugal and Brazil. China and Russia are less closely aligned with other countries in terms of the value of the measures presented. Conclusions Our findings highlight the importance of transparency about data use and about the goals and potential benefits associated with data sharing, including to whom such benefits accrue. They show that members of the public value knowing what benefits accrue from the use of data. The study highlights the importance of locally sensitive measures to increase trust as genomic data sharing continues globally.

Details

ISSN :
1756994X
Volume :
13
Database :
OpenAIRE
Journal :
Genome Medicine
Accession number :
edsair.doi.dedup.....624a25559396cd2fb1595d4e9b9e3a32