School of Law, Birkbeck University of London Institute for Criminal Policy Research, School of Law, London, UK
Department of Psychiatry, University of Oxford, Oxford, UK.
J Med Ethics. 2020 Feb;46(2):137-143. doi: 10.1136/medethics-2019-105396. Epub 2019 Sep 28.
Informed consent procedures for participation in psychiatric genomics research among individuals with mental disorder and intellectual disability can often be unclear, particularly because the underlying ethos guiding consent tools reflects a core ethical tension between safeguarding and inclusion. This tension reflects important debates around the function of consent tools, as well as the contested legitimacy of decision-making capacity thresholds to screen potentially vulnerable participants. Drawing on human rights, person-centred psychiatry and supported decision-making, this paper problematises the use of consent procedures as screening tools in psychiatric genomics studies, particularly as increasing normative emphasis has shifted towards the empowerment and participation of those with mental disorder and intellectual disabilities. We expound on core aspects of supported decision-making, such as relational autonomy and hermeneutic competence, to orient consent procedures towards a more educative, participatory framework that is better aligned with developments in disability studies. The paper concludes with an acknowledgement of the pragmatic and substantive challenges in adopting this framework in psychiatric genomics studies if this participatory ethos towards persons with mental disorder and intellectual disability is to be fully realised.
在精神障碍和智力残疾个体参与精神遗传学研究的告知同意程序中，往往不够清晰，尤其是因为指导同意工具的潜在理念反映了在保障和包容之间的核心伦理紧张关系。这种紧张关系反映了围绕同意工具的功能以及有争议的决策能力门槛的合法性的重要辩论，这些门槛是为了筛选潜在脆弱的参与者。本文借鉴人权、以患者为中心的精神病学和支持性决策，将同意程序作为精神遗传学研究中的筛选工具的使用问题化，特别是因为规范性强调越来越倾向于增强和参与精神障碍和智力残疾人士。我们详细阐述了支持性决策的核心方面，如关系自治和解释能力，以使同意程序朝着更具教育性、更具参与性的框架发展，从而更好地与残疾研究的发展保持一致。本文最后承认，如果要充分实现这种参与精神障碍和智力残疾人士的精神遗传学研究的参与性伦理，在采用这种框架时存在实际和实质性的挑战。
