Healthy Skepticism Library item: 11037

Warning: This library includes all items relevant to health product marketing that we are aware of regardless of quality. Often we do not agree with all or part of the contents.

Publication type: Journal Article

Wilson M.
Human Rights and the Failure of Research Governance
Journal of Disability Policy Studies Summer 2007; 18:(1):57-59
http://www.ingentaconnect.com/content/proedcw/jdps/2007/00000018/00000001/art00006

Abstract:

The recent counterpoint exchange between Koch (2005) and Singer (2005) affords an opportunity to reflect on an issue that is relevant to the ideologies and market forces noted by Koch and to what Singer calls biomedical ethics. This issue concerns how well the rights and welfare of disabled members of the community are advocated and protected in research and by whom.

Revelations of human rights violations in research involving individuals with disabilities raised public concerns more than 35 years ago, and the roots of those human rights problems have resurfaced and now visibly entangle the very governance bodies that were created to protect the vulnerable. In a recently profiled multicentered experiment, Institutional Review Boards (IRBs) at a dozen leading medical research centers failed to inform vulnerable research participants with disabilities or their proxies that the experimental treatments being measured involved serious risks, including possible death, and that research participants were being withdrawn from the best current therapeutic treatment and randomly assigned to an experimental treatment that might increase their risk of dying (Office of Health Research Protections, 2003). The case is one of a number of scandals profiled recently wherein the vulnerable in society are put at risk in research by the very ethics watchdogs assigned to protect them (D. Evans, Smith, & Willen, 2005; Sharav, 2004)…