9780309475174-0309475171-Returning Individual Research Results to Participants: Guidance for a New Research Paradigm

Returning Individual Research Results to Participants: Guidance for a New Research Paradigm

ISBN-13: 9780309475174
ISBN-10: 0309475171
Edition: 1
Author: National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, Board on Health Sciences Policy, Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories
Publication date: 2018
Publisher: National Academies Press
Format: Paperback 398 pages
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Book details

ISBN-13: 9780309475174
ISBN-10: 0309475171
Edition: 1
Author: National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, Board on Health Sciences Policy, Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories
Publication date: 2018
Publisher: National Academies Press
Format: Paperback 398 pages

Summary

Acknowledged authors National Academies of Sciences, Engineering, and Medicine, Health and Medicine Division, Board on Health Sciences Policy, Committee on the Return of Individual-Specific Research Results Generated in Research Laboratories wrote Returning Individual Research Results to Participants: Guidance for a New Research Paradigm comprising 398 pages back in 2018. Textbook and eTextbook are published under ISBN 0309475171 and 9780309475174. Since then Returning Individual Research Results to Participants: Guidance for a New Research Paradigm textbook was available to sell back to BooksRun online for the top buyback price or rent at the marketplace.

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 resultsâ€"such as results with unknown validityâ€"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 stakeholdersâ€"investigators, sponsors, research institutions, institutional review boards (IRBs), regulators, and participantsâ€"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.

Table of Contents
  • Front Matter
  • Summary
  • 1 Introduction
  • 2 Principles for the Return of Individual Research Results: Ethical and Societal Considerations
  • 3 Laboratory Quality Systems for Research Testing of Human Biospecimens
  • 4 Processes to Enable Appropriate Decision Making Regarding the Return of Individual Research Results
  • 5 Advancing Practices for Returning Individual Research Results
  • 6 Reshaping the Legal and Regulatory Landscape to Support Return of Individual Research Results
  • Appendix A: Study Approach and Methods
  • Appendix B: Public Agendas
  • Appendix C: Analysis of Legal and Regulatory Landscape Relevant to Return of Individual Results Generated from Biospecimens in Research
  • Appendix D: The Return of Individual-Specific Research Results from Laboratories: Perspectives and Ethical Underpinnings
  • Appendix E: Biographical Sketches of Committee Members, Consultants, and Staff
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