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Human Subjects Research RegulationPerspectives on the Future$
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I. Glenn Cohen and Holly Fernandez Lynch

Print publication date: 2014

Print ISBN-13: 9780262027465

Published to MIT Press Scholarship Online: January 2015

DOI: 10.7551/mitpress/9780262027465.001.0001

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Toward Human Research Protection That Is Evidence Based and Participant Centered

Toward Human Research Protection That Is Evidence Based and Participant Centered

Chapter:
(p.113) 7 Toward Human Research Protection That Is Evidence Based and Participant Centered
Source:
Human Subjects Research Regulation
Author(s):

Michael McDonald

Susan Cox

Anne Townsend

Publisher:
The MIT Press
DOI:10.7551/mitpress/9780262027465.003.0011

This chapter addresses a fundamental question of whether current research protection systems based on compliance with rules actually do what they purport to do – protect participants without needlessly impeding socially beneficial research. Based on the authors’ prior research, this chapter contends that it is essential to understand 1) how subjects actually experience research participation and (2) how these experiences are interpreted by researchers and research ethics committee members. Using specific examples drawn from subjects' accounts of risk, motivations for research participation, personal responsibility, and benefits/burdens, the authors argue in favour of an evidence-based system based on careful assessment of the actual impacts of research participation on subjects' lives, as opposed to the current rule-compliance system. A key premise of this approach is that the experience of research participants is pivotal to meaningful human subjects’ research protection. In this domain, they are sociologically and ethically “key” informants.

Keywords:   Benefits, Burdens, Risk, Motives for research participation, Participant responsibility, Research participant experiences, Evidence based ethics review

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