Researchers at McGill's Centre of Genomics and Policy (CGP) have launched a first-of-its-kind guide to help Canadian health-care providers offer more inclusive, respectful and affirming care to intersex adults.
Co-written with Intersex Canada and developed in close collaboration with the intersex community, Towards Affirmative Intersex Health Communication in Canada is meant to address barriers in health care faced by people born with variations in physical sex characteristics that do not fit typical binary notions of male or female bodies. These barriers range from stigma and discrimination to gaps in access and communication.
"Affirmative health communication is a key part of providing quality health care for intersex people," explained Terese Knoppers, qualitative lead at the CGP and project co-ordinator.
"There are other guides like this in other countries, but Canada has its own unique medical system and histories. It was important to create a guide for this context and help health-care practitioners sensitively and respectfully engage with this population," they said.
A community-driven, interdisciplinary effort
The guide, which centres intersex voices, responds to health-care professionals' expressed need for tools and resources and to intersex people's experiences of being inadequately served by care providers.
"There was some disconnect between what we were hearing from patients and their families versus from physicians. A guide like this can definitely alleviate that disconnect and fill in blanks," said Yann Joly, Director of the CGP and James McGill Professor in the Department of Human Genetics.
"Health-care providers told us, 'We don't really have anything as students. We want resources like this because we have questions we don't know how to address,'" he said.
Jess Baptista, a graduate student in the Department of Equity, Ethics, and Policy and the Department of Philosophy and a research assistant with the project, noted that it's important for health-care practitioners to understand each patient's language preference.
"The guide doesn't only emphasize 'correct' terminology, but that it's important for providers to take the time to understand how patients want to be addressed," Baptista said.
Outreach and what's next
The free guide is available for download on the CGP website in both English and French. It is intended to evolve through ongoing community feedback.
Distribution channels include hospitals, medical schools, advocacy groups, professional networks and national organizations. The researchers say early reception of the guide has been positive, especially among student associations.
"We are grateful to the community members who trusted us to work on this guide. Moving forward, our role is to listen, follow their lead on next steps and collaborate on the issues they've identified as important," Joly said.
Examples include the fight to end medically unnecessary, non-consensual surgeries on intersex infants and children. These types of procedures remain legal in Canada despite consistent emphasis from the intersex community that they cause physical and psychological harm.
Two companion articles have also been published: a qualitative paper on interviewee insights, perspectives and experiences, and a comparative legal paper arguing for a more proactive approach to legal and medical reforms and protections in Canada.
"We don't want doctors or clinicians to feel uncomfortable. We want to work with them," Joly added. "We are trying to create tools for things to take their course in the way they should. We want the intersex community to be treated with the respect they deserve."
This launch coincides with McGill's Queer History Month. The annual event seeks to raise awareness, advance education and increase the visibility of 2SLGBTQIA+ communities.
About this guide
Towards Affirmative Intersex Health Communication in Canada was funded by a grant from the Social Sciences and Humanities Research Council.
