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Ethics and Human Research, January-February 2020

 

Crowdsourced Research: Vulnerability, Autonomy, and Exploitation

Adrian Kwek

The use of online crowdsourcing platforms to recruit research participants has become ubiquitous in social, behavioral, and educational research. In what sense are crowd workers vulnerable as research participants, and what should ethics reviewers look out for in evaluating a crowdsourced research protocol? The article examines these questions, using the popular crowd-working platform Amazon Mechanical Turk as the key example. The author concludes that crowdsourced research participants are vulnerable to exploitation and proposes measures that ethical reviewers can take against this risk, including encouraging collective action by crowd workers themselves and ground-up crowdsourced research ethics guidelines. Adrian Kewk is senior lecturer in the Centre for University Core at the Singapore University of Social Sciences.

Oversight of Right-to-Try and Expanded Access Requests for Off-Trial Access to Investigational Drugs

Carolyn Riley Chapman, Jared Eckman, Alison S. Bateman-House

For decades, the U.S. Food and Drug Administration has provided an “expanded access” pathway that allows certain patients with life-threatening illnesses to receive an experimental drug without participating in a clinical trial. In 2018, the Right to Try Act created a second mechanism for off-trial access to investigational drugs. In contrast to the expanded access pathway, Right to Try does not require the involvement of the FDA or an institutional review board (IRB). Given that physicians, drug manufacturers, and medical institutions now have a choice whether to assist individual patients through either of the two pathways, the authors review the differences between them and propose that IRB involvement, although not required for the Right to Try pathway, may be beneficial. They discuss the benefits and burdens of IRB oversight and suggests ways that it might be improved. Carolyn Riley Chapman is a faculty affiliate of the Division of Medical Ethics in the Department of Population Health in the NYU School of Medicine at NYU Langone Health. Jared Eckman is an intern at NYU School of Medicine. Alison Bateman-House is an assistant professor in the Division of Medical Ethics at NYU School of Medicine at NYU Langone Health.

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Also in this issue:

Contemporary College Students’ Attitudes About Deception in Research(https://onlinelibrary.wiley.com/doi/10.1002/eahr.500039)

When IRBs Say No to Participating in Research about Single IRBs(https://onlinelibrary.wiley.com/doi/10.1002/eahr.500041)

For more information, and to obtain or to receive the full text of an article, contact:

Susan Gilbert

Director of Communications

The Hastings Center

gilberts@thehastingscenter.org

845-424-4040 x 244

 

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