Chapter

Disability, Vulnerability, and the Capacity to Consent

Stephanie Patterson and Pamela Block

in Research Involving Participants with Cognitive Disability and Difference

Published in print September 2019 | ISBN: 9780198824343
Published online October 2019 | e-ISBN: 9780191863165 | DOI: https://dx.doi.org/10.1093/oso/9780198824343.003.0006
Disability, Vulnerability, and the Capacity to Consent

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  • Cognition and Behavioural Neuroscience
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Does having a diagnosis of intellectual or cognitive disability automatically render a person vulnerable and unable to give informed consent to participate in research? Discussions over a proposed change in United States Federal Human Subjects language brought these issues into keen focus. People who are identified as having a cognitive or mental disability may be no more at risk for abuse in participating in research than non-disabled people and may have equal ability to provide informed consent. We assert that a focus on the ability to consent and power to resist manipulation is a more helpful dividing line than a disability or impairment category. We ask the question: How do we assure personal autonomy when the mechanisms to establish capacity are discriminatory and in violation of a person’s civil rights.

Keywords: capacity to consent; human subjects research; research ethics; vulnerability; cognitive disability; intellectual disability; disability rights; disability justice; independence; impaired decision-making

Chapter.  3863 words. 

Subjects: Cognition and Behavioural Neuroscience ; Neuroscientific Techniques

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