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

Journal of Medical Ethics 46 (2):137-143 (2020)
  Copy   BIBTEX

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.

Links

PhilArchive



    Upload a copy of this work     Papers currently archived: 92,323

External links

Setup an account with your affiliations in order to access resources via your University's proxy server

Through your library

Similar books and articles

Decision-making competence in adults: a philosopher's viewpoint.Donna Dickenson - 2001 - Advances in Psychiatric Treatment 7 (5):381-387.
Informed consent: a primer for clinical practice.Deborah Bowman - 2012 - New York: Cambridge University Press. Edited by John Spicer & Rehana Iqbal.

Analytics

Added to PP
2019-09-29

Downloads
32 (#503,033)

6 months
8 (#370,917)

Historical graph of downloads
How can I increase my downloads?