“Born this Way,” is printed in bold gold glitter on a rainbow flag hanging in my historically gay neighborhood. Over Lady Gaga playing in my brain, I recall a troublesome aspect of the coming out literature and lived experience.
The person coming out explains that they would never choose to be LGBTQIA, but it is completely outside of their control, they were born this way. They might start talking about gay genes, hormones in the womb, or some other biological phenomenon that bestowed their gayness upon them. Sometimes these clarifications place blame on self-flagellating parents who provided the wrong environment or genetic material and must cope with knowing they cursed their children with a wretched life. The focus on nature pops up in civil rights fights as well. As if the morality surrounding LGBTQIA lives would allow for persecution of LGBTQIA people if they choose their existence, but since they didn’t, they need protections.
As positive LGBTQIA visibility increases and self-loathing becomes less central to LGBTQIA identities (in my corner of U.S. culture anyway), will we see a shift away from caring about how we biologically ended up this way inside and outside of the communities? Will those outside the communities insist on knowing even if LGBTQIA cultures and needed medical care moves on? Homosexuality and gender and sex disorder research isn’t new. While ill-willed intents are abound in this area of research, the aim was often alleviating LGBTQIA people of the burden of living outside the sexuality, gender, sex, etc. binaries or off the center of the known bell curve or normalizing the experience through understanding. During the dawn of the genomics era it made sense to look for that rainbow bit of genetic material since we were aiming to map function to every molecule of the human genome, with or without media fascination.
When I started asking about why we learn about the bodies and brains of LGBTQIA people and wanted to learn more I started simple. I typed, “homosexual genes” into the U.S. National Library of Medicine database, PubMed. I hope you come back to read more about some of the fantastic articles that came up (or search yourself at www.pubmed.gov). Today, I want to touch on a human interest piece on interactions between a researcher and the community his research serves.
In May of 2016, Sara Reardon reported on the work of Dr. Eric Vilain for Nature. Dr. Vilain is a pediatric geneticist who is a world expert on genetic determinants of disorders of sex development (DSDs). During his training in the 80’s he operated on numerous babies within the 1-2% born with intermediate genitalia, as a standard practice of care that continues to this day. Dr. Vilain explains that doctors believed that abnormal genitals were incompatible with a functional life to the extent that premature babies with micropenises were allowed to die. Today, his research has brought him to working closely with intersex advocacy groups for better medical treatment.
In 2011 Dr. Vilain established a long needed longitudinal study on psychological and medical well-being of children with DSDs. He has built a positive reputation with the community by trying to get the term hermaphrodite out of medical vocabulary and communicating with other doctors about the harms of incorrectly assigning gender at birth versus allowing children to live with intermediate genitals. However, he is still controversial in the intersex community for not condemning other doctors who perform sex-assignment surgeries on infants with DSDs and has lost activists and ethicists working on his longitudinal study. Factors in this rift between medicine, researchers, and the community include strong wishes of parents and infants who cannot speak for themselves. Vilain has said he’s committed to producing data and evidence and tries to listen to the community. The community, understandably, does not feel it is sufficiently consulted.