Patient activism and the ethics of clinical trials: a perspective from neuromuscular disorders

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  2. Dr Pauline McCormack
  3. Dr Simon Woods
Author(s)McCormack P, Woods S
Editor(s)
Publication type Conference Proceedings (inc. Abstract)
Conference NameTREAT-NMD International
Conference LocationGeneva, Switzerland
Year of Conference2011
Date8-11 November 2011
Volume
Pages
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We look at how patient activism has led to charges that the ethics of research in clinical trials are too conservative and potentially restrictive of research that is seen as urgent and necessary. We examine this problem from the perspective of active patients and patient advocates and argue for alternative approaches to what ought or ought not to be permitted. Using our work with TREAT-NMD, the neuromuscular clinical trials network, we posit that there is a place for advancing the discourse of moral rights and moral duties in the context of research especially from the perspective of patients and their families and including the politics of patient activism and empowerment. We look at how patient groups employ a combination of rights activism, political consumerism, and expression of personal autonomy through collective action, to ensure they have a part in driving the research agenda. This leads to questions as to whether such active and self-educated patients can be considered inherently vulnerable, a notion which is contained the Helsinki Declaration of ethical principles for medical research and which is often assumed by those in charge of ethics governance. At the same time we remain vigilant to the danger that the therapeutic misconception and other serious vulnerabilities for the patient population in clinical trials, are at risk of being overlooked.
URLhttp://www.treat-nmd-conference.org/