Balancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project

TitleBalancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project
Publication TypeJournal Article
Year of Publication2016
AuthorsZarate, OA, Brody, JGreen, Brown, P
JournalHastings Center Report
Volume46
Issue1
Pagination36-45
Date Published01/01/
Publication Languageeng
ISBN Number0093-0334
AbstractIn considering what informed consent and research protocols should entail in this era of big data, researchers and institutional review boards can benefit from listening to the experiences of people who volunteer for studies with extensive data sharing and novel forms of consent.
NotesCover Date: JAN-FEB 2016.Source Info: 46(1), 36-45. Language: English. Journal Announcement: 50-2. Subject: BIG DATA; BIOETHICS; CONSENT; DATA SHARING; ETHICS; GENOMICS; OPEN; RESEARCH ETHICS. Update Code: 20180130.
DOI10.1002/hast.523

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