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1دورية أكاديمية
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
وصف الملف: application/pdf
العلاقة: hdl:11353/10.1615621; https://phaidra.univie.ac.at/o:1615621Test
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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)
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 -
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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
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
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 -
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المؤلفون: Bartha Maria Knoppers, Adrian Thorogood, Yann Joly, Amalia M. Issa
المصدر: Genetics in Medicine. 21:1894-1900
مصطلحات موضوعية: medicine.medical_specialty, Evidence gathering, business.industry, Rare mutations, medicine, Medical physics, Personalized medicine, Precision medicine, business, Genetics (clinical)
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::292272e2d88bd25f269a83a5185b8f5dTest
https://doi.org/10.1038/s41436-018-0264-5Test -
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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)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
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 -
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المصدر: Human Mutation
مصطلحات موضوعية: 0301 basic medicine, Special Issue Articles, Genomic data, Reliability (computer networking), data sharing, Context (language use), 030105 genetics & heredity, Biology, Interactive software, 03 medical and health sciences, Special Article, Software, Databases, Genetic, Genetics, Humans, European Union, law, Genetics (clinical), Genetic Databases, business.industry, medical device, software, regulation, Genomics, Data science, United States, 3. Good health, public genetic variant databases, Harm, business, Risk classification, FDA
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::e73e852c3a14a3719517b322d92af566Test
http://europepmc.org/articles/PMC6221175Test -
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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
وصف الملف: application/zip; application/pdf; text/xml; Print-Electronic
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::883c0d495f14640aa9176e4d12551cfeTest
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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.2020.08.023مصطلحات 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
وصف الملف: application/pdf
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::072c94135fd2d8d37b9ee4804a4866efTest
https://hdl.handle.net/11250/2760207Test -
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المؤلفون: Shaman Narayanasamy, Varvara Markina, Adrian Thorogood, Adriana Blazkova, Mahsa Shabani, Bartha M. Knoppers, Barbara Prainsack, Robert Koesters
المصدر: Frontiers in Genetics, Vol 11 (2020)
Frontiers in Geneticsمصطلحات موضوعية: 0301 basic medicine, lcsh:QH426-470, Process (engineering), Reuse, Genome, 03 medical and health sciences, 0302 clinical medicine, policies, Medicine and Health Sciences, Genetics, PARTICIPANTS, Genetics(clinical), raw, procedures, Data retention, GDPR, research participant rights, Genetics (clinical), Exome sequencing, Original Research, PRIVACY, Genomic sequencing, patient rights, Data science, lcsh:Genetics, 030104 developmental biology, PROTECT, ELSI, 030220 oncology & carcinogenesis, NGS, Molecular Medicine, POINTS, Business, Raw data, Personal genomics
وصف الملف: application/pdf
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6fcabd9ebf0d4ae2a640867674f7abe8Test
https://www.frontiersin.org/article/10.3389/fgene.2020.00303/fullTest -
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المؤلفون: Adrian Thorogood
المصدر: Human Genetics
مصطلحات موضوعية: 0301 basic medicine, business.industry, Internet privacy, Privacy laws of the United States, Cloud computing, ComputingMilieux_LEGALASPECTSOFCOMPUTING, Review, 030105 genetics & heredity, Biology, Safeguarding, 16. Peace & justice, Federal law, 03 medical and health sciences, 030104 developmental biology, General Data Protection Regulation, Health care, Genetics, Genetic discrimination, business, Personally identifiable information, Genetics (clinical)
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::36948ec2f641aba32f185921fffded03Test
http://europepmc.org/articles/PMC6132649Test