I would likely have been purged by DOGE

You may be wondering how happy I am to no longer be working at the NIH. I had intended to work until I was 70. If my position had not gotten so “toxic” for my mental and physical health, I would likely still be there until November of this year when I turn 70 However, if I were still there, I would likely be on target to be purged relatively soon because I was the co-founder of a sex and gender minorities working group (less formal than a committee) in the National Institute of Diabetes, Digestive and Kidney Diseases (NIKKD). This week, all the employees of the Office of Sex and Gender Minorities at the National Intitutes of Health (mothership for the institutes) were fired or placed on administrative leave. With more time, DOGE will dig into institute level data and find those individuals who were on institute level groups.

This NIDDK working group started with a lesbian woman, myself and a hetero man from the institute communications office. I was involved because I had more knowledge than most about sex and gender terminology and challenges based on the Prevention of Lower Urinary Tract Symptoms (PLUS) research consortium that I had founded. The purpose of the group was to discover ways to prevent bladder problems in women and girls. I had to the group of over 50 scientists (majority female) grapple with the question “how are we going to define women?”. There was one person in the research group that was a lesbian and worked at Howard Brown, a health care facility in Chicago that provided care to the LGBTQ community. She educated us and encouraged us to be deliberate in our decision making.

This was the first of many, many questions that almost brought me to my knees over the first 2 years of the consortium. It took me a while to truly understand the sex and gender issues and the importance of them.

Lesson 1 – Sex is biologically determined by external genitalia – males have a penis and females do not for the vast majority of individual. However there are babies born with both male and female reproductive organs and baby boys that do not have a penis due to faulty genetics. For most people this is a black and white issue and it is hard to imagine anyone that does not into this dichotomy.

Lesson 2 – Gender is a cultural construct – how a person feels; how they identify. People born with a penis might be much more comfortable with the behaviors and activities that society has defined as for girls and women and vice versa. Some individuals may be comfortable in roles assigned to men and women independent of their reproductive organs or simply not identify one way or the other. At this time a biological male cannot give birth but he can assume the role of a mother.

Lesson 3 – Sexual Attraction is separate from sex and gender. A person can be attracted to someone like them or someone opposite of them or to a person who does not identify as a man or a woman.

Lesson 4 – A transsexual person does not identify as the gender of the body they were born into. For someone that is comfortable in their own gender this is very hard to fathom and it makes people uncomfortable. For some trans individuals dressing as their preferred gender may fulfill their needs; for others, they need hormonal therapy to suppress or enhance biologic characteristics; some need to have breast implants or breast removal (top surgery) and some need to have their genitals altered to match their gender identity (bottom surgery). There are NO rules. It is about the person living their life as true to themselves as they can be.

Once I had these 4 lessons straight in my mind I was less confused and realized these are deeply personal issues that no one chooses. Aside from causing others discomfort and confusion, how someone identifies and who someone chooses to love should not concern anyone. I do understand the angst about transfemales (biologic males) in competitive women’s sports but it does not need to be the political hot potato it has become. I will do a separate blog about that.

From a scientific perspective, there may be important health considerations beyond sexually transmitted infections in some of these small sex and gender groups that do not fall into the traditional dichotomies of male/female, man/woman. We have no way of knowing this because the Case Report Forms in all of the NIH research only collected data about biologic sex (male or female).

So this was why I was willing to get involved. We needed to start at the very beginning and begin to gather data about not just sex, but gender and sexual attraction as well. The PLUS consortium scientists had many protracted discussions about this – everyone agreed we needed to ask the questions but there was concern as to how the participants would feel about being asked. What we found out is that no one cared. They simply answered the questions and there were no concerns. There were very few individuals that chose not to answer the questions but no more than did not answer other sensitive questions such as income level.

Why is this important? When you have enough data on smaller groups of people (minorities) you can start to find out if there is any difference in the way they respond to a treatment. If there is a difference and it is a positive or negative difference, scientists work to discover why and it could potentially lead to a discovery that could impact the majority in a positive way.

So the NIDDK working group of 3 gradually became a working group of about 30 over about 18 months after we educated or colleagues as to why it is important to ask the questions. The group transitioned to a formal committee about the time I left in 2021 and then disappeared over night after the election in November. Hopefully enough data will have been gathered in the last 2-5 years when these questions were asked to provide a foundation for more directed research in the future once sanity is restored (I am being optimistic here).

How did PLUS handle these issues? We asked the questions (sex, gender and sexual attraction). As one of the proposed barriers to bladder health is bathroom access and cleanliness, we recruited sex and gender minorities into our focus group research to see if there were any issues unique to them. We intended to mail surveys out through the mail to be filled out by the woman in the household. We needed to know if it would make a difference if the person answering the survey was a biologic or transfemale. What we discovered is that while the reasons for lack of bathroom access might be different, the questionnaire worked well in both groups. The good news is that the survey is inclusive for all women. However, the number of trans women is so small that it may be difficult to determine if there are any differences between the groups. BUT at least we asked.

I am very glad I am not experiencing the current chaos at the NIH.