{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T02:36:56Z","timestamp":1777516616461,"version":"3.51.4"},"reference-count":32,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2021,5,25]],"date-time":"2021-05-25T00:00:00Z","timestamp":1621900800000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2021,5,25]],"date-time":"2021-05-25T00:00:00Z","timestamp":1621900800000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"DOI":"10.13039\/100004440","name":"Wellcome Trust","doi-asserted-by":"publisher","award":["206194"],"award-info":[{"award-number":["206194"]}],"id":[{"id":"10.13039\/100004440","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Genome Med"],"published-print":{"date-parts":[[2021,12]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Background<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>We analyse the \u2018Your DNA, Your Say\u2019 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>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\u2014endorsed 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.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusions<\/jats:title>\n                <jats:p>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.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1186\/s13073-021-00903-0","type":"journal-article","created":{"date-parts":[[2021,5,25]],"date-time":"2021-05-25T07:02:27Z","timestamp":1621926147000},"update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":58,"title":["Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries"],"prefix":"10.1186","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8770-2384","authenticated-orcid":false,"given":"Richard","family":"Milne","sequence":"first","affiliation":[]},{"given":"Katherine I.","family":"Morley","sequence":"additional","affiliation":[]},{"given":"Mohamed A.","family":"Almarri","sequence":"additional","affiliation":[]},{"given":"Shamim","family":"Anwer","sequence":"additional","affiliation":[]},{"given":"Jerome","family":"Atutornu","sequence":"additional","affiliation":[]},{"given":"Elena E.","family":"Baranova","sequence":"additional","affiliation":[]},{"given":"Paul","family":"Bevan","sequence":"additional","affiliation":[]},{"given":"Maria","family":"Cerezo","sequence":"additional","affiliation":[]},{"given":"Yali","family":"Cong","sequence":"additional","affiliation":[]},{"given":"Alessia","family":"Costa","sequence":"additional","affiliation":[]},{"given":"Christine","family":"Critchley","sequence":"additional","affiliation":[]},{"given":"Josepine","family":"Fernow","sequence":"additional","affiliation":[]},{"given":"Peter","family":"Goodhand","sequence":"additional","affiliation":[]},{"given":"Qurratulain","family":"Hasan","sequence":"additional","affiliation":[]},{"given":"Aiko","family":"Hibino","sequence":"additional","affiliation":[]},{"given":"Gry","family":"Houeland","sequence":"additional","affiliation":[]},{"given":"Heidi C.","family":"Howard","sequence":"additional","affiliation":[]},{"given":"S. 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Participants are informed that their consent is given when they choose to click off the landing page and start answering the questions. On the landing page, the purpose of the project is explained as well as what participation involves, participants have a choice at any stage within the survey, to stop answering the questions and withdraw. The online project is physically based at the Wellcome Genome Campus with all data collected and stored in encrypted files at the Wellcome Sanger Institute in Cambridge. As part of the conditions of research delivery at this research institution, the project passed ethical review by the Human Materials and Data Management Committee of the Wellcome Sanger Institute (Registration Number: 16\/029) as well as legal review to ensure that it was compliant with ethical and legal standards for participant involvement, data collection and storage. This ethics approval was sufficient to cover recruitment into the online survey for most of the collaborators attached to the project; with the exception of Australia, whereby the University of Tasmania required an additional local IRB process to be completed plus their own separate consent form adding onto the landing page of the survey for Australian participants only. The study was approved by the Tasmanian Social Sciences Human Research Ethics Committee on the 5th of July 2017, reference number H0016682. This research conformed to the Declaration of Helsinki.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"Not applicable","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"KM, DM, QH and SA declare no competing interests associated with their affiliations. The remaining authors declare no competing interests.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}],"article-number":"92"}}