Consent insufficient for data release

التفاصيل البيبلوغرافية
العنوان: Consent insufficient for data release
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
بيانات النشر: American Association for the Advancement of Science, 2019.
سنة النشر: 2019
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
الوصف: In their Policy Forum "Toward unrestricted use of public genomic data" (25 January, p. 350), R. I. Amann et al. argue that once data has been cleared for release to the public domain by institutions, it should be open for use without further restrictions. However, they neglect the key point that researchers and their institutions are entrusted by research participants, funders, and others with weighing the pros and cons of public data release. By suggesting that informed consent can provide a straightforward path to data release, they overlook evidence that once people understand their options, only a little more than half opt for open data sharing, and some refuse data sharing altogether.
وصف الملف: Print
تدمد: 0036-8075
الوصول الحر: https://explore.openaire.eu/search/publication?articleId=doi_dedup___::6564881176deee6e10187eda1c7eafadTest
http://hdl.handle.net/10852/76217Test
حقوق: OPEN
رقم الانضمام: edsair.doi.dedup.....6564881176deee6e10187eda1c7eafad
قاعدة البيانات: OpenAIRE