I recently came across a harmful news article that incorrectly quotes a blog I wrote in 2017. The blog was originally written for a children’s science museum, describing the differences between intersex and transgender identities. The news article took the quote of out of context and used my words to support the idea that genetic variations related to sex are all ‘disorders,’ not normal variations, and implies my statements support oppressive legislation against the transgender and intersex communities. I was outraged that someone used my work to support this rhetoric and upon rereading my original post, I realized how my words were misconstrued and used for harm.

Ongoing Discrimination and Damaging Rhetoric

Politicians and news writers often twist biological research to meet their agendas, citing how genetics ‘supports’ their ideas of binary sex and gender, and how anything beyond those parameters is characterized as a ‘disorder.’ This pathologization fuels discrimination toward intersex and transgender communities. Modern expert understanding of genetics, biology, and psychology supports the existence of a spectrum of sexes and genders. Despite this, lawmakers continue to distort biological research and use cultural gender stereotypes to strip transgender people of necessary gender affirmation options and push unnecessary surgeries and hormones onto intersex children. This same ‘proof’ is used in the discriminatory anti-transgender athlete bans spreading across the country. Genetics professionals need to examine how we contribute to this damaging rhetoric and how we can become stronger advocates for our patients and peers within the intersex and transgender communities.

Intersex traits continue to be heavily pathologized in genetics conversations. Curriculums that discuss intersex people often heavily focus on ‘treatments’ for sex variations rather than on increasing societal acceptance and understanding through amplifying the voices of the intersex community. In many cases, these variations in sex characteristics carry no medical harm—so why does society intensely focus on treatment? Not only does this framework contribute to discrimination in clinical care and, subsequently, medical avoidance, but it warps how society understands intersex identities. This framework ultimately perpetuates the notion that intersex people have a ‘disorder’ rather than normal variation.

Unintended Consequences of Research

Recent genetic studies have sought to determine the genetic underpinnings of transgender identities. No research has been published on how transgender individuals feel about these kinds of genetic studies. Before conducting this research, genetics professionals need to examine how our norms are created and why we feel so compelled to find out why? These genetic explorations run the risk of contributing to the pathologization of identities and the validation of discrimination. The field of genetics has a dark history of eugenics, yet it seems this type of research continues to progress with little regard for ethical consequences. How might this type of study fuel the othering of transgender people, and how can lawmakers use this data to support harmful legislation? In the era of social media, public opinion on medicine quickly becomes as legitimate as a doctor’s or a researcher’s. In this environment, genetics professionals need to be more careful than ever when it comes to the social implications of our work.

Importance of Inclusive Language and Counseling

As a whole, genetics professionals need to think critically about how we amplify the pathologization of transgender and intersex identities. How are the pictures of genitalia we use in lectures dehumanizing and spurring the continuation of inhumane genital surgeries on intersex infants? When we discuss ‘ambiguous genitalia’ as a finding, what messages are we sending new or expecting parents? How do we perpetuate cis-normativity when we describe prenatal screening for sex chromosomes or discuss ‘gender reveals’ with patients? How do we provoke medical avoidance in these communities? How is the information we publish about sex chromosome differences and genetic variations used to push harmful agendas? Is our research actually helping these communities? Are we taking responsible stances in manuscripts to mitigate distortion of findings? Are we speaking against misrepresentation of genetic data used to ‘support’ binary concepts? Are we taking a stand when we see injustice? Are we allies for these communities, or are we contributing to the problem?

Become an Advocate for Intersex and Transgender People

It is time for genetic counseling programs to reassess how we discuss sex and gender in our curriculums and equip students with the tools to become advocates for intersex and transgender communities. Our understanding of sex and gender is evolving, and our language must evolve too. We must be critical of the uses of ‘nondirectiveness’ and not use nondirectiveness as an excuse for being a complicit bystander. We cannot sacrifice quality medical care for false objectivity. Misinformation on gender and sex comes at the expense of the survival of these vulnerable communities. As genetics professionals, we need to use the platforms we hold to combat twisted rhetoric of sex and gender. This is a call for genetics professionals and organizations to take strong and public stances against the use of genetics for the oppression of intersex and transgender people.

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