Education versus screening: the use of capacity to consent tools in psychiatric genomics

• Published in: Journal of medical ethics Vol. 46; no. 2; pp. 137 - 143
• Main Authors: Kong, Camillia, Efrem, Mehret, Campbell, Megan
• Format: Journal Article
• Language: English
• Published: England BMJ Publishing Group Ltd and Institute of Medical Ethics 01.02.2020; BMJ Publishing Group LTD
• Subjects: Biomedical Research - ethics; capacity; Cognition; Cognition & reasoning; Cognitive ability; Decision Making; Disabled Persons; Empowerment; Ethics, Research; Extended essay; genetic screening/testing; Genomics; Genomics - ethics; Handicapped accessibility; Human rights; Humans; Informed consent; Informed Consent - ethics; Informed Consent - psychology; Intellectual disabilities; Intellectual Disability; Medical ethics; Medical research; Mental Competency; Mental Disorders; mentally ill and disabled persons; Participation; Patient Participation; Patient-centered care; People with disabilities; Psychiatry; Psychiatry - ethics; Research Design; Research Subjects; informed consent; genetic screening/testing; mentally ill and disabled persons; capacity
• ISSN: 0306-6800; 1473-4257; 1473-4257
• DOI: 10.1136/medethics-2019-105396

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.