Research Catalog

Returning individual research results to participants : guidance for a new research paradigm

Title
Returning individual research results to participants : guidance for a new research paradigm / Jeffrey R. Botkin, Michelle Mancher, Emily R. Busta, and 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 ; a consensus study report of The National Academies of Sciences, Engineering, Medicine.
Publication
  • Washington, DC : The National Academies Press, [2018]
  • ©2018

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Additional Authors
  • Botkin, Jeffrey R.
  • Mancher, Michelle
  • Busta, Emily R.
  • Downey, Autumn S.
  • National Academies of Sciences, Engineering, and Medicine (U.S.). Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories.
  • National Academies of Sciences, Engineering, and Medicine (U.S.). Board on Health Sciences Policy, issuing body. http://id.loc.gov/vocabulary/relators/isb
  • National Academies of Sciences, Engineering, and Medicine (U.S.). Health and Medicine Division, issuing body. http://id.loc.gov/vocabulary/relators/isb
Description
xxvii, 370 pages : illustrations (chiefly color); 23 cm.
Summary
"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"--Publisher's description
Series Statement
Consensus study report of The National Academies of Sciences, Engineering, Medicine
Uniform Title
Consensus study report.
Subjects
Bibliography (note)
  • Includes bibliographical references.
Contents
Summary -- Introduction -- Principles for the return of individual research results : ethical and societal considerations -- Laboratory quality systems for research testing of human biospecimens -- Processes to enable appropriate decision making regarding the return of individual research results -- Advancing practices for returning individual research results -- Reshaping the legal and regulatory landscape to support return of individual research results -- Appendixes. Study approach and methods -- Public agendas -- Analysis of legal and regulatory landscape relevant to return of individual results generated from biospecimens in research -- The return of individual-specific research results from laboratories: perspectives and ethical underpinnings -- Biographical sketches of committee members, consultants, and staff.
ISBN
  • 9780309475174
  • 0309475171
LCCN
2018950906
OCLC
  • on1048937277
  • 1048937277
  • SCSB-9177621
Owning Institutions
Columbia University Libraries