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

Abstract

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.

The Africa Ethics Working Group (AEWG): a model of collaboration for psychiatric genomic research in Africa

“…Perhaps this situation contributed to AEWG evolving into an independent research group to allow it to empirically examine ethical questions that arose from the genetics studies but also to address topics such as equity in their collaboration. The result of this evolution has been the publication of a wide array of work that explores various issues that are applicable to many areas of mental health research such as the concept of vulnerability of psychiatric research patients and issues of translation and informed consent for psychiatric genomics research ( Kamaara et al ., 2020 ; Kong et al ., 2020 ; Palk et al ., 2020 ).…”