Returning Individual Research Results to Participants: Guidance for a New Research Paradigm
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-suc...
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| creator | Downey, Autumn S Busta, Emily R Mancher, Michelle Botkin, Jeffrey R |
| description | 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. |
| doi_str_mv | 10.17226/25094 |
| format | Book |
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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.</description><edition>1</edition><identifier>ISBN: 9780309475174</identifier><identifier>ISBN: 0309475171</identifier><identifier>EISBN: 030947518X</identifier><identifier>EISBN: 9780309475181</identifier><identifier>EISBN: 9780309475204</identifier><identifier>EISBN: 0309475201</identifier><identifier>DOI: 10.17226/25094</identifier><identifier>OCLC: 1046985414</identifier><language>eng</language><publisher>Washington, D.C: National Academies Press</publisher><subject>Clinical trials ; Human experimentation in medicine ; Medicine ; Outcome assessment (Medical care) ; Participant observation</subject><creationdate>2018</creationdate><tpages>398</tpages><format>398</format><rights>2018</rights><oa>free_for_read</oa><woscitedreferencessubscribed>false</woscitedreferencessubscribed><relation>Consensus study report of The National Academies of Sciences, Engineering, Medicine</relation></display><links><openurl>$$Topenurl_article</openurl><openurlfulltext>$$Topenurlfull_article</openurlfulltext><thumbnail>$$Tsyndetics_thumb_exl</thumbnail><link.rule.ids>306,776,780,782,27902</link.rule.ids></links><search><contributor>Jeffrey R. Botkin</contributor><contributor>Autumn S. Downey</contributor><contributor>Michelle Mancher</contributor><contributor>Emily R. Busta</contributor><creatorcontrib>Downey, Autumn S</creatorcontrib><creatorcontrib>Busta, Emily R</creatorcontrib><creatorcontrib>Mancher, Michelle</creatorcontrib><creatorcontrib>Botkin, Jeffrey R</creatorcontrib><creatorcontrib>Board on Health Sciences Policy</creatorcontrib><creatorcontrib>Health and Medicine Division</creatorcontrib><creatorcontrib>National Academies of Sciences, Engineering, and Medicine</creatorcontrib><creatorcontrib>Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories</creatorcontrib><title>Returning Individual Research Results to Participants: Guidance for a New Research Paradigm</title><description>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.
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| identifier | ISBN: 9780309475174 |
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| language | eng |
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| source | NCBI Bookshelf |
| subjects | Clinical trials Human experimentation in medicine Medicine Outcome assessment (Medical care) Participant observation |
| title | Returning Individual Research Results to Participants: Guidance for a New Research Paradigm |
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