Towards supported decision-making in biomedical research with cognitively vulnerable adults
Towards supported decision-making in biomedical research with cognitively vulnerable adults
A particular challenge for consent in biomedical research is the participation of adults with mental disorder or intellectual disability to a degree that impinges on but does not necessarily erode decisional competence. This challenge is emphasized by recent developments in neuroscience which have reinvigorated interest in biomedical research with cognitively vulnerable human participants, particularly research into the origins and treatment of mental disorder. This chapter argues that we can best understand the scope and limits of consent as a ‘procedural’ principle of empowerment. It grounds this argument in a rationalist moral theory of human (or agency) rights devised by Alan Gewirth (1978). Drawing on the recent work of Gewirthian legal theorists Beyleveld and Brownsword (2004 and 2007), it offers a defence of the ethical significance of consent as a procedural human rights value, which does not in itself constitute a substantive human right.
Keywords: informed consent, empowerment, biomedical research, human rights, mental disorder, intellectual disability, decisional competence
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