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

Autor: 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
Přispěvatelé: 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
Rok vydání: 2021
Předmět:
Hälso- och sjukvårdsorganisation
hälsopolitik och hälsoekonomi
0301 basic medicine
International surveys
QH426-470
030105 genetics & heredity
Trust
Online Systems
[SHS.HISPHILSO]Humanities and Social Sciences/History
Philosophy and Sociology of Sciences
03 medical and health sciences
Surveys and Questionnaires
Genomic data
Genetics
Humans
Sanctions
ddc:610
Public value
Marketing
Molecular Biology
Genetics (clinical)
Trustworthiness
Medicinsk genetik
[SDV.GEN]Life Sciences [q-bio]/Genetics
Relative value
[SHS.SOCIO]Humanities and Social Sciences/Sociology
Information Dissemination
Public trust
Research
Genomics
Health Care Service and Management
Health Policy and Services and Health Economy
Transparency (behavior)
Genomic research
[SDV.ETH]Life Sciences [q-bio]/Ethics
3. Good health
Data sharing
030104 developmental biology
Data access
[SDV.GEN.GH]Life Sciences [q-bio]/Genetics/Human genetics
Ranking
Medicine
Molecular Medicine
Business
Medical Genetics
Zdroj: 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)
ISSN: 1756-994X
DOI: 10.1186/s13073-021-00903-0
Popis: 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.
Databáze: OpenAIRE
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