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

Forskningsoutput: TidskriftsbidragArtikel i vetenskaplig tidskrift


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.


  • Richard Milne
  • Katherine I. Morley
  • Mohamed A. Almarri
  • Shamim Anwer
  • Jerome Atutornu
  • Elena E. Baranova
  • Paul Bevan
  • Maria Cerezo
  • Yali Cong
  • Alessia Costa
  • Christine Critchley
  • Josepine Fernow
  • Peter Goodhand
  • Qurratulain Hasan
  • Aiko Hibino
  • Gry Houeland
  • S. Zakir Hussain
  • Charlotta Ingvoldstad Malmgren
  • Vera L. Izhevskaya
  • Aleksandra Jędrzejak
  • Cao Jinhong
  • Megumi Kimura
  • Erika Kleiderman
  • Brandi Leach
  • Keying Liu
  • Deborah Mascalzoni
  • Álvaro Mendes
  • Jusaku Minari
  • Dianne Nicol
  • Christine Patch
  • Jack Pollard
  • Barbara Prainsack
  • Marie Rivière
  • Lauren Robarts
  • Jonathan Roberts
  • Haytham A. Sheerah
  • James Smith
  • Alexandra Soulier
  • Claire Steed
  • Vigdis Stefànsdóttir
  • Cornelia Tandre
  • Adrian Thorogood
  • Torsten H. Voigt
  • Nan Wang
  • Anne V. West
  • Go Yoshizawa
  • Anna Middleton
Enheter & grupper
Externa organisationer
  • Wellcome Trust Sanger Institute
  • European Bioinformatics Institute
  • Peking University
  • Swinburne University of Technology
  • University of Tasmania
  • Uppsala universitet
  • Ontario Institute for Cancer Research
  • Hirosaki University Graduate School of Medicine
  • Karolinska Institute
  • Research Centre for Medical Genetics
  • Wuhan University
  • Hitotsubashi University
  • EURAC Research, Institute for Biomedicine
  • University of Vienna
  • King's College London
  • University of Paris III: Sorbonne Nouvelle
  • National University Hospital of Iceland
  • RWTH Aachen University
  • Wellcome Trust
  • University of Cambridge
  • RAND Europe
  • University of Melbourne
  • Dubai Police GHQ
  • Keynote IAS
  • Russian Medical Academy of Continuous Professional Education (RMAPE)
  • Kamineni Hospitals
  • SAAZ Genetics
  • McGill University
  • Osaka University
  • University of Porto
  • Kyoto University
  • Queen Mary University
  • Indiana University
  • Oslo Metropolitan University

Ämnesklassifikation (UKÄ) – OBLIGATORISK

  • Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi
TidskriftGenome Medicine
Utgåva nummer1
StatusPublished - 2021 dec 1
Peer review utfördJa