The Challenges in Access to Healthcare for Intersex Individuals
The McGill Research Group on Health and Law (RGHL) invites you to its third seminar of the university year, delivered by Professor Yann Joly, DCL'09, Research Director of the Centre of Genomics and Policy (CGP), and Associate Professor at the Faculty of Medicine of McGill University.
Space is limited. Kindly RSVP to rghl.law [at] mcgill.ca.
This event is eligible for inclusion as 1.5 hours of continuing legal education as reported by members of the Barreau du Québec.
About 1.7% of the Canadian population falls under the umbrella of “intersex”, including sexual variation at the chromosomal, gonadal, hormonal, and genital levels. For intersex patients, healthcare is fraught with difficulties due to the various harms they suffer, including the concealment of medical information and trauma due to non-consensual pediatric surgical procedures.
In June 2017, three former US Surgeon Generals published a policy brief recognizing the psychosocial harms caused by the stigmatization of intersex individuals. Furthermore, in October 2017, the Parliamentary Assembly of the Council of Europe called for a ban on medically unnecessary "sex-normalizing" surgical interventions on intersex children. Unfortunately, intersex individuals still face serious human rights violations, discrimination, and stigmatization. Qualitative research, on which best practices and medical policies can be based to prevent these prejudices, remains underdeveloped. Additionally, there is presently a lack of Canadian-specific guidance or explicit legal protections to guide healthcare providers in their relationship with intersex patients.
This seminar will present the development of our project on access to healthcare for the intersex population in Québec and Canada, focusing on the following aspects: 1) presentation of the main objectives of the project; 2) challenges posed by research with the intersex community; 3) identification of foreign laws and policies of interest for the Canadian context; and 4) a description of the next steps to enable the development of public policies allowing better access to healthcare for this marginalized population.
About the speaker
Yann Joly, Ph.D. (DCL), FCAHS, Ad.E., is the Research Director of the Centre of Genomics and Policy (CGP), located inside the Genome Quebec Innovation Centre at McGill University. He is also an Associate Professor at the Faculty of Medicine, Department of Human Genetics cross-appointed at the Bioethics Unit, at McGill University. Professor Joly is a member of the Canadian Commission for UNESCO (CCU) Sectoral Commission for Natural, Social and Human Sciences. He is the current Chair of the Bioethics Workgroup of the International Human Epigenome Consortium (IHEC), and of the Ethics and Governance Committee of the International Cancer Genome Consortium (ICGC). He is also a member of the Human Genome Organization (HUGO) Committee on Ethics, Law and Society (CELS). Professor Joly’s research interests lie at the interface of the fields of scientific knowledge, health law (biotechnology and other emerging health technologies) and bioethics.