Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
| العنوان: | Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries |
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| المؤلفون: | 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 |
| المساهمون: | 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 |
| المصدر: | 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) |
| بيانات النشر: | Springer Science and Business Media LLC, 2021. |
| سنة النشر: | 2021 |
| مصطلحات موضوعية: | 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 |
| الوصف: | 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. |
| وصف الملف: | application/pdf; application/zip; text/xml |
| تدمد: | 1756-994X |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::624a25559396cd2fb1595d4e9b9e3a32Test https://doi.org/10.1186/s13073-021-00903-0Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....624a25559396cd2fb1595d4e9b9e3a32 |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 1756994X |
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