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المؤلفون: Heidi J. Sofia, Kathy Reinold, Petr Holub, Gregory A. Rushton, Sarion R. Bowers, Melissa A. Konopko, Anthony J. Brookes, Chihiro Hata, Jaime M. Guidry Auvil, Giselle Kerry, Stephanie O. M. Dyke, Rebecca R. Boyles, Tony Burdett, Mallory A. Freeberg, Fabian Prasser, Soichi Ogishima, Jordi Rambla, Aina Jene, Matthew Brush, Mélanie Courtot, Ilia Tulchinsky, Esther van Enckevort, Minae Kawashima, Moran N. Cabili, Jonathan Lawson, Laura A.D. Paglione, Helen Parkinson, Tommi Nyrönen, Adrian Thorogood, Satoshi Nagaie, Craig Voisin, Anthony A. Philippakis, Pinar Alper, Haoyuan Li, Susheel Varma, John Dylan Spalding, Hayley L. Clissold, Gary I. Saunders, Natsuko Yamamoto, Nicola Mulder, Morris A. Swertz, Ravi N. Pandya, Melissa Haendel, Mikael Linden, Mizuki Morita, Vivian Ota Wang, Jean Muller, Chisato Yamasaki, Lyndon Zass, Francis Jeanson, Irene Kyomugisha, Stacey Donnelly, Tiffany Boughtwood, Laura Lyman Rodriguez, Jamal Nasir, Andrea Saltzman, Shuichi Kawashima
المصدر: Cell Genomics
مصطلحات موضوعية: secondary data use, Vocabulary, Technology, Computer science, media_common.quotation_subject, Data management, data restrictions, Ontology (information science), Biochemistry, biophysics & molecular biology [F05] [Life sciences], Ontologia, Biochemistry, Genetics and Molecular Biology (miscellaneous), 03 medical and health sciences, Annotation, 0302 clinical medicine, data access, Conjunts de dades, Genetics, ontology, Biochimie, biophysique & biologie moléculaire [F05] [Sciences du vivant], automated data access, 030304 developmental biology, media_common, FAIR, Computer science [C05] [Engineering, computing & technology], 0303 health sciences, business.industry, Authorization, GA4GH, standard, Ontology language, Sciences informatiques [C05] [Ingénierie, informatique & technologie], controlled access, Data science, 3. Good health, Data access, Community awareness, consent, business, 030217 neurology & neurosurgery
وصف الملف: application/pdf
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::df22314d877b3036a3aa912462062c75Test
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المؤلفون: Michael J.S. Beauvais, Adrian Thorogood
المصدر: Philosophies, Vol 6, Iss 93, p 93 (2021)
Philosophies
Volume 6
Issue 4مصطلحات موضوعية: History, Polymers and Plastics, Logic, media_common.quotation_subject, Genomic research, research ethics, B1-5802, direct-to-participant, Industrial and Manufacturing Engineering, History and Philosophy of Science, Sovereignty, genomics, Data Protection Act 1998, Mobile technology, research ethics committee, Philosophy (General), Business and International Management, law, media_common, Research ethics, BC1-199, Jurisdiction, business.industry, Public relations, Additional research, Philosophy, international collaboration, Bureaucracy, business
وصف الملف: application/pdf
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::48da8838698cdcd07875c24fb5d39fe2Test
https://doi.org/10.2139/ssrn.3928895Test -
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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: Bartha Maria Knoppers, Ma'n H. Zawati, Adrian Thorogood
مصطلحات موضوعية: business.industry, media_common.quotation_subject, Corporate governance, education, Duty to rescue, Public relations, humanities, Fiduciary, Common Criteria, Right to know, Quality (business), Business, health care economics and organizations, media_common
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_________::d0cc3823c0bc310bf0e3c7dcae8b7abdTest
https://doi.org/10.1016/b978-0-12-816549-2.00002-3Test -
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المؤلفون: Adrian Thorogood, Bartha Maria Knoppers, Gratien Dalpé
المصدر: Frontiers in Genetics
Frontiers in Genetics, Vol 10 (2019)مصطلحات موضوعية: 0301 basic medicine, legally authorized representatives, lcsh:QH426-470, Vulnerable adult, media_common.quotation_subject, Best practice, data sharing, education, Vulnerability, human rights, 03 medical and health sciences, 0302 clinical medicine, Policy and Practice Reviews, children, Research participant, Genetics, Data Protection Act 1998, Genetics (clinical), media_common, Research ethics, research, business.industry, capacity, Public relations, 16. Peace & justice, humanities, 3. Good health, lcsh:Genetics, 030104 developmental biology, 030220 oncology & carcinogenesis, Molecular Medicine, consent, incompetent adults, Return of results, Psychology, business, Autonomy
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::f261229200ed179927687fe53e51f0a0Test
http://europepmc.org/articles/PMC6459892Test -
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المؤلفون: Mike Burgess, Lisa Eckstein, Heidi Beate Bentzen, Stephanie M. Fullerton, Eric M. Meslin, Barbara A. Koenig, Jane Kaye, Mahsa Shabani, Spero M. Manson, Kazuto Kato, Kieran C. O’Doherty, Edward S. Dove, Pascal Borry, Mildred K. Cho, Ryuichi Ida, Dianne Nicol, Kimberlyn McGrail, Adrian Thorogood, Jantina de Vries, Wylie Burke, Barbara Prainsack, Holly K. Tabor, Don Chalmers
مصطلحات موضوعية: 0303 health sciences, Multidisciplinary, Informed Consent, business.industry, media_common.quotation_subject, Internet privacy, Genomics, Public domain, Neglect, Data sharing, 03 medical and health sciences, Open data, 0302 clinical medicine, Informed consent, Political science, Confidentiality, business, Data release, 030217 neurology & neurosurgery, 030304 developmental biology, media_common, Clearance
وصف الملف: Print
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6564881176deee6e10187eda1c7eafadTest
http://hdl.handle.net/10852/76217Test -
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المصدر: Journal of Law and the Biosciences
مصطلحات موضوعية: 0301 basic medicine, medicine.medical_specialty, Inclusion (disability rights), media_common.quotation_subject, data sharing, research ethics, Internet privacy, Medicine (miscellaneous), 0603 philosophy, ethics and religion, Best interests, Biochemistry, Genetics and Molecular Biology (miscellaneous), law.invention, 03 medical and health sciences, law, Medicine, Data Protection Act 1998, Psychiatry, media_common, Research ethics, business.industry, capacity, Ethical decision, 06 humanities and the arts, best interests, Discretion, humanities, 3. Good health, substitute consent, Data sharing, 030104 developmental biology, CLARITY, Original Article, 060301 applied ethics, business, Law
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::9100ff85f0edf203d5c25964a16ad8b1Test
https://pubmed.ncbi.nlm.nih.gov/28852560Test -
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المؤلفون: Ma'n H. Zawati, Adrian Thorogood
المصدر: Journal of Law, Medicine & Ethics. 43:690-702
مصطلحات موضوعية: 0301 basic medicine, Genetic Research, Internationality, media_common.quotation_subject, Internet privacy, 030105 genetics & heredity, Access to Information, 03 medical and health sciences, Informed consent, Political science, Databases, Genetic, Humans, Data Protection Act 1998, Genetic Privacy, Socioeconomics, Biological Specimen Banks, media_common, Research ethics, Informed Consent, Human rights, business.industry, Health Policy, Corporate governance, General Medicine, Biobank, Issues, ethics and legal aspects, 030104 developmental biology, Pluralism (political theory), business, Anonymity
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::da571f793baf265696e1320e23502181Test
https://doi.org/10.1111/jlme.12312Test -
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المؤلفون: Adrian Thorogood, Bartha Maria Knoppers, Ruth Chadwick
المصدر: Genome Medicine
مصطلحات موضوعية: Research ethics, Computer science, business.industry, media_common.quotation_subject, Distribution (economics), Intellectual property, Social issues, Bioinformatics, Musings, Revelation, Informed consent, Law, Genetics, Molecular Medicine, Confidentiality, business, Molecular Biology, Genetics (clinical), Autonomy, media_common
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::2621fb480c0f900ca59144868485a35cTest
https://doi.org/10.1186/gm442Test
