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181108 r ||| eng |
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|a 0309475171
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|a 9780309475174
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|a Botkin, Jeffrey R.
|e [editor]
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| 245 |
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|a Returning individual research results to participants
|h Elektronische Ressource
|b guidance for a new research paradigm
|c Jeffrey R. Botkin, Michelle Mancher, Emily R. Busta, Autumn S. Downey, editors ; Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories, Board on Health Sciences Policy, Health and Medicine Division
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| 260 |
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|a Washington, DC
|b The National Academies Press
|c 2018, [2018]
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| 300 |
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|a 1 PDF file (xxvii, 370 pages)
|b illustrations
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|a Includes bibliographical references
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| 653 |
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|a Biomedical Research / ethics
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| 653 |
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|a Human Experimentation
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| 653 |
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|a Patient Access to Records / ethics
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| 653 |
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|a Ethics, Research
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| 653 |
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|a Disclosure / ethics
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| 653 |
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|a Research Subjects
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| 653 |
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|a Duty to Recontact / ethics
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| 700 |
1 |
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|a Mancher, Michelle
|e [editor]
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| 700 |
1 |
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|a Busta, Emily R.
|e [editor]
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| 700 |
1 |
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|a Downey, Autumn S.
|e [editor]
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| 710 |
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|a National Academies of Sciences, Engineering, and Medicine (U.S.)
|b Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories
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|a eng
|2 ISO 639-2
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| 989 |
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|b NCBI
|a National Center for Biotechnology Information
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| 490 |
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|a Consensus study report
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| 856 |
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|u https://www.ncbi.nlm.nih.gov/books/NBK513173
|3 Volltext
|n NLM Bookshelf Books
|3 Volltext
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|a 140
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|a 170
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|a When is it appropriate to return individual research results to participants? The immense interest in this question has been fostered by the growing movement toward greater transparency and participant engagement in the research enterprise. Yet, the risks of returning individual research results--such as results with unknown validity--and the associated burdens on the research enterprise are competing considerations. Returning Individual Research Results to Participants reviews the current evidence on the benefits, harms, and costs of returning individual research results, while also considering the ethical, social, operational, and regulatory aspects of the practice. This report includes 12 recommendations directed to various stakeholders--investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participants--and are designed to help (1) support decision making regarding the return of results on a study-by-study basis, (2) promote high-quality individual research results, (3) foster participant understanding of individual research results, and (4) revise and harmonize current regulations
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