Diversity, Equity, Inclusion and Justice Position Statements & Resources

Given the wide use of genetics in many medical and science disciplines, and the inaccurate historical association between race and genetics, it is critical that all clinical trainees and healthcare professionals understand the ways that policies, social and structural inequities (including but not limited to racism, homophobia, transphobia, sexism, and disability bias), communication, and cultural context shape the equitable implementation of genomic medicine for all. It is also imperative to recognize the historical roots of the biased systems in which we work, the ways in which scientists and clinicians practicing genetics contribute(d) to the healthcare disparities that emerged from these systems, and the responsibility we all share to dismantle these systems of oppression through equitable patient care, advocacy, research, and education. A clear understanding of this context along with a solid foundation in genetics and genomics will help to disentangle biological factors from social and cultural factors that contribute to health, disease risk, and outcomes, which will lead to more precise, individualized, and ethical patient care. We provide the position statements and accompanying resources below to help our community of educators to train a more inclusive genetics healthcare workforce and to broadly promote equity and inclusion.

Gender Inclusivity Resources


APHMG Statement on Gender Inclusivity (June 29, 2022)

In order to effectively deliver patient-centered care, a provider must build trust with their patients. This keystone of quality patient care is jeopardized when a patient’s identity has not been seen and affirmed. Unfortunately, the LGBTQ+ community has continued to have their very existence questioned and threatened in public discourse, thereby amplifying healthcare disparities experienced by gender- and sexually-diverse individuals. With recent events restricting gender affirming care and limiting acknowledgement of the fundamental existence of lesbian, gay, bisexual, transgender, queer, intersex, non-binary and other LGBTQ+ community members, these foundational principles of equity are threatened for the entire community. Furthermore, an understanding of intersectionality also demonstrates disproportionate health impact on LGBTQ+ people of color, people of limited means, and other vulnerable populations who already are significantly at risk. Importantly, as gender affirming care is an issue with a basis in bodily autonomy, other issues that impact agency over one’s own body, such as restrictions on pregnancy termination and reproductive care throughout the country, can magnify concerns of bodily autonomy for the LGBTQ+ community.

We recognize that all patients deserve access to quality, affirming healthcare. As geneticists, we know that the language of hereditary is highly gendered and heteronormative. As educators, we know that we can help the next generation of providers adopt language and perspective that does not limit itself to these frameworks. Patient-centered care is one of the foundational elements of genetics consultation, and in this climate, it is especially important that our classrooms and clinics work against growing discriminatory practices.

This work builds upon the resources we have previously compiled to promote racial justice and equity in reproductive health practices. It also grows from our session on “Gender Inclusivity in Medical Genetics Education” held during our virtual joint meeting with ABE in 2021 and our in-person workshop on “Bringing Gender Inclusivity Into the Classroom: Why and How” conducted at our 2022 Palm Springs conference. At this time, the necessity to further promote equitable and inclusive education on these topics has only grown more urgent. Below we have compiled a list of resources that can provide some tools to learn and teach about the differences between sex and gender, the ways in which sex impacts molecular genetic phenomena and inheritance, and a framework for presenting these topics that are inclusive of all identities. We hope these resources will help you continue in your own work on this call to action. Most importantly, we remain committed to working and learning together-- not just during this Pride Month, but also moving forward-- and endorse practices promoting inclusion and justice for all. Thank you for joining us in this critical effort.

Onward Together,

Shoumita Dasgupta, PhD, Past-President

Katherine M. Hyland, PhD, President

Steve Moore, PhD, President-Elect

Anna C.E. Hurst, MD, MS, Secretary/Treasurer

Deborah Barbouth, MD, Council Member

Kathryn Garber, PhD, Council Member

Lois Starr, MD, PhD, Council Member

Resources:

*This focused revision builds on the expert opinions of the original publications of “Recommendations for Human Standardized Pedigree Nomenclature” published in 1995 and updated in 2008. A major focus of this publication is clarification of the use of symbols and language in the description of the distinction between sex and gender, with a view to ensure safe and inclusive practice for people who are gender-diverse or transgender. The goal of this document is to provide guidance on pedigree nomenclature which respects individual differences and identities while maintaining biologically, clinically, and genetically meaningful information. This document is in its final review stages and is scheduled to be published in Fall 2022. The link to this document will be updated upon publication.  

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