Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia
| العنوان: | Trust in genomic data sharing among members of the general public in the UK, USA, Canada and Australia |
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| المؤلفون: | Lauren Farley, Dianne Nicol, James Smith, Adrian Thorogood, Jerome Atutornu, Katherine I. Morley, Claire Steed, Heidi Carmen Howard, Christine Critchley, Paul Bevan, Anna Middleton, Barbara Prainsack, Danya F. Vears, Erika Kleiderman, Emilia Niemiec, Peter Goodhand, Richard Milne |
| المساهمون: | Middleton, Anna [0000-0003-3103-8098], Apollo - University of Cambridge Repository |
| المصدر: | Human Genetics |
| بيانات النشر: | Springer Science and Business Media LLC, 2019. |
| سنة النشر: | 2019 |
| مصطلحات موضوعية: | Adult, Male, Medical Ethics, Canada, Genetic Research, Adolescent, Big data, Information Dissemination, Legislation, Biology, Trust, Medicinsk etik, Young Adult, 03 medical and health sciences, Databases, Genetic, Genetics, Humans, Relevance (law), Child, Survey, health care economics and organizations, Genetics (clinical), Original Investigation, 030304 developmental biology, 0303 health sciences, Genome, business.industry, 030305 genetics & heredity, Australia, Genomics, Tvärvetenskapliga studier inom samhällsvetenskap, Middle Aged, Public, Public relations, Donation, Biobank, United Kingdom, United States, Latent class model, 3. Good health, Data sharing, Cross-Sectional Studies, Female, Social Sciences Interdisciplinary, business |
| الوصف: | Trust may be important in shaping public attitudes to genetics and intentions to participate in genomics research and big data initiatives. As such, we examined trust in data sharing among the general public. A cross-sectional online survey collected responses from representative publics in the USA, Canada, UK and Australia (n = 8967). Participants were most likely to trust their medical doctor and less likely to trust other entities named. Company researchers were least likely to be trusted. Low, Variable and High Trust classes were defined using latent class analysis. Members of the High Trust class were more likely to be under 50 years, male, with children, hold religious beliefs, have personal experience of genetics and be from the USA. They were most likely to be willing to donate their genomic and health data for clinical and research uses. The Low Trust class were less reassured than other respondents by laws preventing exploitation of donated information. Variation in trust, its relation to areas of concern about the use of genomic data and potential of legislation are considered. These findings have relevance for efforts to expand genomic medicine and data sharing beyond those with personal experience of genetics or research participants. Electronic supplementary material The online version of this article (10.1007/s00439-019-02062-0) contains supplementary material, which is available to authorized users. |
| وصف الملف: | application/pdf; text/xml; Print-Electronic |
| تدمد: | 1432-1203 0340-6717 |
| الوصول الحر: | https://explore.openaire.eu/search/publication?articleId=doi_dedup___::0c502886a20a722a41ae8722785316eeTest https://doi.org/10.1007/s00439-019-02062-0Test |
| حقوق: | OPEN |
| رقم الانضمام: | edsair.doi.dedup.....0c502886a20a722a41ae8722785316ee |
| قاعدة البيانات: | OpenAIRE |
| تدمد: | 14321203 03406717 |
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