المؤلفون: Richard Milne (Society and Ethics Research Group, Wellcome Connecting Science), Katherine I. Morley (RAND Europe), Mohamed A. Almarri (Wellcome Sanger Institute), Shamim Anwer (Keynote IAS), Jerome Atutornu (Society and Ethics Research Group, Wellcome Connecting Science), Elena E. Baranova (Russian Medical Academy of Continuous Professional Education), Paul Bevan (Wellcome Sanger Institute), Maria Cerezo (EMBL-EBI, Wellcome Genome Campus), Yali Cong (Medical Ethics Program, Peking University Health Science Center), Alessia Costa (Society and Ethics Research Group, Wellcome Connecting Science), Christine Critchley (Department of Psychological Sciences, Swinburne University of Technology), Josepine Fernow (Centre for Research Ethics & Bioethics (CRB), Uppsala University), Peter Goodhand (Ontario Institute for Cancer Research), Qurratulain Hasan (Department of Genetics & Molecular Medicine, Kamineni Hospitals), Aiko Hibino (Faculty of Humanities and Social Sciences, Hirosaki University), Gry Houeland (Centre for Research Ethics & Bioethics (CRB), Uppsala University), Heidi C. Howard (Medical Ethics, Lund Universitet), S. Zakir Hussain (SAAZ Genetics), Charlotta Ingvoldstad Malmgren (Department of Public Health and Caring Scienec, Uppsala University), Vera L. Izhevskaya (Research Centre for Medical Genetics), Aleksandra Jędrzejak (n/a), Cao Jinhong (Department of Epidemiology and Biostatistics, School of Health Sciences, Wuhan University), Megumi Kimura (Institute of Innovation Research, Hitotsubashi University), Erika Kleiderman (Centre of Genomics and Policy, McGill University), Brandi Leach (RAND Europe), Keying Liu (Public Health, Department of Social Medicine, Osaka University Graduate School of Medicine), Deborah Mascalzoni (Institute of Biomedicine, EURAC), Álvaro Mendes (UnIGENe and CGPP – Centre for Predictive and Preventive Genetics, IBMC – Institute for Molecular and Cell Biology, i3S – Instituto de Investigação e Inovação em Saúde, Universidade do Porto), Jusaku Minari (Uehiro Research Division for iPS Cell Ethics, Center for iPS Cell Research and Application (CiRA), Kyoto University), Dianne Nicol (Centre for Law and Genetics, University of Tasmania), Emilia Niemiec (Centre for Research Ethics & Bioethics (CRB), Uppsala University), Christine Patch (Society and Ethics Research Group, Wellcome Connecting Science), Jack Pollard (RAND Europe), Barbara Prainsack (Department of Political Science, Faculty of Social Sciences, University of Vienna), Marie Rivière (DILTEC, Sorbonne Nouvelle), Lauren Robarts (Society and Ethics Research Group, Wellcome Connecting Science), Jonathan Roberts (Society and Ethics Research Group, Wellcome Connecting Science), Virginia Romano (Centre for Research Ethics & Bioethics (CRB), Uppsala University), Haytham A. Sheerah (Public Health, Department of Social Medicine, Osaka University Graduate School of Medicine), James Smith (Wellcome Sanger Institute), Alexandra Soulier (Centre for Research Ethics & Bioethics (CRB), Uppsala University), Claire Steed (Wellcome Sanger Institute), Vigdis Stefànsdóttir (Landspitali, the National University Hospital of Iceland), Cornelia Tandre (Centre for Research Ethics & Bioethics (CRB), Uppsala University), Adrian Thorogood (Centre of Genomics and Policy, McGill University), Torsten H. Voigt (Institute of Sociology, RWTH Aachen University), Nan Wang (Medical Ethics Program, Peking University Health Science Center), Anne V. West (Indiana University Maurer School of Law), Go Yoshizawa (Work Research Institute (AFI), Oslo Metropolitan University), Anna Middleton (Society and Ethics Research Group, Wellcome Connecting Science)

المصدر: Genome Medicine ; issn:1756-994X

مصطلحات موضوعية: Genetics (clinical), Genetics, Molecular Biology, Molecular Medicine

الوصف: The abstract is available here: https://uscholar.univie.ac.at/o:1615621Test ; The abstract is available here: https://uscholar.univie.ac.at/o:1615621Test

وصف الملف: application/pdf

العلاقة: hdl:11353/10.1615621; https://phaidra.univie.ac.at/o:1615621Test

الإتاحة: https://doi.org/10.1186/s13073-021-00903-0Test
https://phaidra.univie.ac.at/o:1615621Test

المؤلفون: Anna, Middleton, Christine, Patch, Jonathan, Roberts, Richard, Milne, Alessia, Costa, Lauren, Robarts, Jerome, Atutornu

المساهمون: Wellcome Trust

المصدر: European Journal of Human Genetics ; volume 28, issue 10, page 1301-1304 ; ISSN 1018-4813 1476-5438

مصطلحات موضوعية: Genetics (clinical), Genetics

الوصف: The legal duty to protect patient confidentiality is common knowledge amongst healthcare professionals. However, what may not be widely known, is that this duty is not always absolute. In the United Kingdom, both the General Medical Council governing the practice of all doctors, as well as many other professional codes of practice recognise that, under certain circumstances, it may be appropriate to break confidentiality. This arises when there is a wider duty to protect the health of others, and when the risk of non-disclosure outweighs the potential harm from breaking confidentiality. We discuss this situation specifically in relation to genomic medicine where relatives in a family may have differing views on the sharing of familial genetic information. Overruling a patient’s wishes is predicated on balancing the duty of care towards the patient versus protecting their relative from serious harm. We discuss the practice implications of a pivotal legal case that concluded recently in the High Court of Justice in England and Wales, ABC v St Georges Healthcare NHS Trust & Ors . Professional guidance is already clear that genetic healthcare professionals must undertake a balancing exercise to weigh up contradictory duties of care. However, the judge has provided a new legal weighting to these professional duties: ‘The scope of the duty extends not only to conducting the necessary balancing exercise but also to acting in accordance with its outcome’ [1: 189]. In the context of genomic medicine, this has important consequences for clinical practice.

الإتاحة: https://doi.org/10.1038/s41431-020-0663-3Test
http://www.nature.com/articles/s41431-020-0663-3.pdfTest
http://www.nature.com/articles/s41431-020-0663-3Test

المؤلفون: Anna Middleton, Nicola Taverner, Natalie Moreton, Roberta Rizzo, Catherine Houghton, Catherine Watt, Esther Horton, Sara Levene, Phil Leonard, Athalie Melville, Somya Ellis, Vishakha Tripathi, Christine Patch, Elaine Jenkins

المصدر: European Journal of Human Genetics. 31:13-15

مصطلحات موضوعية: Genetics, Genetics (clinical)

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::a46d3d020497ed39b2ceaa743947d5ddTest
https://doi.org/10.1038/s41431-022-01212-9Test

المؤلفون: Anna Middleton, Nicola Taverner, Catherine Houghton, Sarah Smithson, Meena Balasubramanian, Frances Elmslie

المساهمون: Middleton, Anna [0000-0003-3103-8098], Taverner, Nicola [0000-0001-5456-597X], Apollo - University of Cambridge Repository

مصطلحات موضوعية: Counselors, Professional Role, Genetics, Humans, Nurses, Genetic Counseling, Genetics (clinical), United Kingdom

الوصف: This document is written on behalf of the two professional bodies in the United Kingdom that represent genetic counsellors (the Association of Genetic Nurses and Counsellors) and clinical geneticists (the Clinical Genetics Society) and aims to support multidisciplinary working of these professional groups highlighting within a quick-reference format, areas of shared practice and the distinctions between role profiles for a Consultant Clinical Geneticist, Principal/Consultant Genetic Counsellor and the new support role that we have termed ‘Genomic Associate’, see AGNC career structure [1]. This builds on published documents that articulate the scope of practice of the clinical genetics workforce [2] and specifically the genetic counsellor [3] and clinical geneticist [4] roles.

وصف الملف: text/xml; application/pdf

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8f555558df37f3987d32c094a156ffbcTest
https://www.repository.cam.ac.uk/handle/1810/345110Test

المؤلفون: Richard Milne, Katherine I. Morley, Mohamed A. Almarri, Jerome Atutornu, Elena E. Baranova, Paul Bevan, Maria Cerezo, Yali Cong, Alessia Costa, Carolina Feijao, Cláudia de Freitas, Josepine Fernow, Peter Goodhand, Qurratulain Hasan, Aiko Hibino, Gry Houeland, Heidi C. Howard, Zakir Hussain Sheikh, Charlotta Ingvoldstad Malmgren, Vera L. Izhevskaya, Aleksandra Jędrzejak, Cao Jinhong, Megumi Kimura, Erika Kleiderman, Keying Liu, Deborah Mascalzoni, Álvaro Mendes, Jusaku Minari, Dianne Nicol, Emilia Niemiec, Christine Patch, Barbara Prainsack, Marie Rivière, Lauren Robarts, Jonathan Roberts, Virginia Romano, Haytham A. Sheerah, James Smith, Alexandra Soulier, Claire Steed, Vigdis Stefànsdóttir, Cornelia Tandre, Adrian Thorogood, Torsten H. Voigt, Nan Wang, Go Yoshizawa, Anna Middleton

المصدر: Genetics in Medicine

مصطلحات موضوعية: Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi, DNA, Intention, Genomics, Health Care Service and Management, Health Policy and Services and Health Economy, Return of results, United States, Attitude, Surveys and Questionnaires, Attitudes, Data donation, International, Humans, International research results, Genetics (clinical)

الوصف: Purpose: The aim of this study was to determine how attitudes toward the return of genomic research results vary internationally. Methods: We analyzed 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, and these were gathered in 15 languages. We analyzed how participants responded when asked whether return of results (RoR) would motivate their decision to donate DNA or health data. We examined variation across the study countries and compared the responses of participants from other countries with those from the United States, which has been the subject of the majority of research on return of genomic results to date. Results: There was substantial variation in the extent to which respondents reported being influenced by RoR. However, only respondents from Russia were more influenced than those from the United States, and respondents from 20 countries had lower odds of being partially or wholly influenced than those from the United States. Conclusion: There is substantial international variation in the extent to which the RoR may motivate people’s intent to donate DNA or health data. The United States may not be a clear indicator of global attitudes. Participants’ preferences for return of genomic results globally should be considered. This work was supported by Wellcome grant 206194 to Society and Ethics Research, Wellcome Connecting Science, Wellcome Genome Campus.

وصف الملف: application/pdf

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::8a5c870a4eb863859c89f39ae03fbc06Test
http://urn.kb.se/resolve?urn=urn:nbn:se:uu:diva-468511Test

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

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

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::0c502886a20a722a41ae8722785316eeTest
https://doi.org/10.1007/s00439-019-02062-0Test

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)

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

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::624a25559396cd2fb1595d4e9b9e3a32Test
https://doi.org/10.1186/s13073-021-00903-0Test

المؤلفون: Peter Goodhand, Claire Steed, Jason Bobe, Katherine I. Morley, Richard Milne, Christine Critchley, Danya F. Vears, Erick R. Scott, Jerome Atutornu, Adrian Thorogood, Anna Middleton, Paul Bevan, Emilia Niemiec, Erika Kleiderman, Barbara Prainsack, Heidi Carmen Howard, Laurens Robarts, James Smith, Dianne Nicol

المساهمون: Middleton, Anna [0000-0003-3103-8098], Milne, Richard [0000-0002-8770-2384], Nicol, Dianne [0000-0002-6553-2839], Vears, Danya F. [0000-0002-6290-545X], Apollo - University of Cambridge Repository

المصدر: European Journal of Human Genetics

مصطلحات موضوعية: Adult, Male, Value (ethics), Canada, Health Knowledge, Attitudes, Practice, medicine.medical_specialty, Genomics, Social sciences, 03 medical and health sciences, 706/689/179, Genetics, medicine, Humans, Genetic Testing, Sociology, Genetik, Genetic Privacy, Genetics (clinical), Other Social Sciences, Medicinsk genetik, 030304 developmental biology, Ethics, 0303 health sciences, Participant Values Work Stream of the Global Alliance for Genomics and Health, Genome, Human, Information Dissemination, business.industry, Genetic exceptionalism, 030305 genetics & heredity, Australia, article, 706/689, Middle Aged, Public relations, Publics, United Kingdom, United States, Data sharing, Public Opinion, Donation, Scale (social sciences), Annan samhällsvetenskap, Medical genetics, Female, business, Medical Genetics

الوصف: Funder: State Government of Victoria (Victorian Government); doi: https://doi.org/10.13039/501100004752Test
Funder: Victorian State Government
Public acceptance is critical for sharing of genomic data at scale. This paper examines how acceptance of data sharing pertains to the perceived similarities and differences between DNA and other forms of personal data. It explores the perceptions of representative publics from the USA, Canada, the UK and Australia (n = 8967) towards the donation of DNA and health data. Fifty-two percent of this public held ‘exceptionalist’ views about genetics (i.e., believed DNA is different or ‘special’ compared to other types of medical information). This group was more likely to be familiar with or have had personal experience with genomics and to perceive DNA information as having personal as well as clinical and scientific value. Those with personal experience with genetics and genetic exceptionalist views were nearly six times more likely to be willing to donate their anonymous DNA and medical information for research than other respondents. Perceived harms from re-identification did not appear to dissuade publics from being willing to participate in research. The interplay between exceptionalist views about genetics and the personal, scientific and clinical value attributed to data would be a valuable focus for future research.

وصف الملف: application/zip; application/pdf; text/xml; Print-Electronic

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::883c0d495f14640aa9176e4d12551cfeTest

المؤلفون: Vera L. Izhevskaya, Gry Houeland, Aleksandra Jędrzejak, Dianne Nicol, Deborah Mascalzoni, Jerome Atutornu, Josepine Fernow, Jack Pollard, Alexandra Soulier, Aiko Hibino, Christine Critchley, Jusaku Minari, Erika Kleiderman, Lauren Robarts, Keying Liu, James Smith, Álvaro Mendes, Adrian Thorogood, Shamim Anwer, Heidi Carmen Howard, Cornelia Tandre, Katherine I. Morley, Virginia Romano, Brandi Leach, Torsten Heinemann, Charlotta Ingvoldstad Malmgren, Paul Bevan, Nan Wang, Anne V. West, Jonathan Roberts, Cao Jinhong, Anna Middleton, Vigdis Stefansdottir, Barbara Prainsack, Christine Patch, Peter Goodhand, Haytham A. Sheerah, Go Yoshizawa, S. Zakir Hussain, Mohamed A. Almarri, Yali Cong, Claire Steed, Emilia Niemiec, Qurratulain Hasan, Maria Cerezo, Richard Milne, Elena E. Baranova, Marie Rivière, Megumi Kimura

المساهمون: DILTEC - Didactique des langues, des textes et des cultures - EA 2288 (DILTEC), Université Sorbonne Nouvelle - Paris 3

المصدر: American Journal of Human Genetics
American Journal of Human Genetics, Elsevier (Cell Press), 2020, ⟨10.1016/j.ajhg.2020.08.023⟩
The American journal of human genetics 107(4), 743-752 (2020). doi:10.1016/j.ajhg.2020.08.023

مصطلحات موضوعية: 0301 basic medicine, Male, Health Knowledge, Attitudes, Practice, data sharing, health data, Disease, 030105 genetics & heredity, Health data, [SHS.HISPHILSO]Humanities and Social Sciences/History, Philosophy and Sociology of Sciences, data donation, Surveys and Questionnaires, Genetics (clinical), media_common, [SHS.SOCIO]Humanities and Social Sciences/Sociology, attitudes, public, High-Throughput Nucleotide Sequencing, Genomics, global, Europe, Donation, Female, Public Health, Psychology, Systemvetenskap, informationssystem och informatik med samhällsvetenskaplig inriktning, Hälso- och sjukvårdsorganisation, hälsopolitik och hälsoekonomi, Adult, Asia, media_common.quotation_subject, Internet privacy, Information Systems, Social aspects, Trust, Article, 03 medical and health sciences, Perception, ddc:570, Genetics, Genomic data, Humans, survey, Global perceptions, [SDV.GEN]Life Sciences [q-bio]/Genetics, business.industry, Genome, Human, Information Dissemination, Perspective (graphical), genomic data sharing, Australia, Health Care Service and Management, Health Policy and Services and Health Economy, Sequence Analysis, DNA, [SDV.ETH]Life Sciences [q-bio]/Ethics, Data sharing, Public perceptions, 030104 developmental biology, Attitudes, Public trust, genomic data, Americas, business, Medical ethics

الوصف: Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.Analyzing genomic data across populations is central to understanding the role of genetic factors in health and disease. Successful data sharing relies on public support, which requires attention to whether people around the world are willing to donate their data that are then subsequently shared with others for research. However, studies of such public perceptions are geographically limited and do not enable comparison. This paper presents results from a very large public survey on attitudes toward genomic data sharing. Data from 36,268 individuals across 22 countries (gathered in 15 languages) are presented. In general, publics across the world do not appear to be aware of, nor familiar with, the concepts of DNA, genetics, and genomics. Willingness to donate one’s DNA and health data for research is relatively low, and trust in the process of data’s being shared with multiple users (e.g., doctors, researchers, governments) is also low. Participants were most willing to donate DNA or health information for research when the recipient was specified as a medical doctor and least willing to donate when the recipient was a for-profit researcher. Those who were familiar with genetics and who were trusting of the users asking for data were more likely to be willing to donate. However, less than half of participants trusted more than one potential user of data, although this varied across countries. Genetic information was not uniformly seen as different from other forms of health information, but there was an association between seeing genetic information as special in some way compared to other health data and increased willingness to donate. The global perspective provided by our “Your DNA, Your Say” study is valuable for informing the development of international policy and practice for sharing genomic data. It highlights that the research community not only needs to be worthy of trust by the public, but also urgent steps need to be taken to authentically communicate why genomic research is necessary and how data donation, and subsequent sharing, is integral to this.

وصف الملف: application/pdf

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::072c94135fd2d8d37b9ee4804a4866efTest
https://hdl.handle.net/11250/2760207Test

المؤلفون: Anna Middleton, Barbara Prainsack, Emilia Niemiec, Verena Holtz, Torsten Heinemann, Heidi Carmen Howard

المساهمون: Voigt, Torsten H. [0000-0002-6033-2862], Apollo - University of Cambridge Repository, Voigt, Torsten H [0000-0002-6033-2862]

المصدر: European Journal of Human Genetics
European journal of human genetics 28(8), 1000-1009 (2020). doi:10.1038/s41431-020-0611-2

مصطلحات موضوعية: Adult, Male, Health Knowledge, Attitudes, Practice, Databases, Factual, Sample (statistics), German, 03 medical and health sciences, 631/208, 706/689/179, Germany, Genetics, Humans, ddc:610, Cooperative Behavior, Genetic Privacy, Genetics (clinical), 030304 developmental biology, Other Social Sciences, Medicinsk genetik, Ethics, 0303 health sciences, Informed Consent, Genetic exceptionalism, Interpretation (philosophy), 030305 genetics & heredity, article, Middle Aged, Public good, language.human_language, Public discourse, language, Annan samhällsvetenskap, Female, Patient Participation, Psychology, Social psychology, Medical Genetics

الوصف: European journal of human genetics (2020). doi:10.1038/s41431-020-0611-2
Published by Stockton Press, Basingstoke

وصف الملف: text/xml; application/pdf

الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::ee938f3c3c251e6fb8c64095bc96c59dTest