Research on Pregnancy Rarely Includes Trans and Queer Birthing People. A New Study Is Changing That

by Megan Burbank

For decades, queer and trans birthing people have been left out of medical research on pregnancy and birth, which has historically centered the experiences of white, cisgender straight couples. But a new study housed partially at the University of Washington and led by queer and trans researchers is setting a new standard for inclusion. It's the first study of its size to focus specifically on the pregnancy care and birthing experiences of trans and queer birthing people.

Known as Birth Includes Us, the study is a collaboration between the University of Washington's School of Nursing and the University of British Columbia's Birth Place Lab, and it focuses on bringing greater equity to medical encounters related to pregnancy care and family-making. "One of our hopes around this study is that once we get the results out, what it's going to do is shine a light on how we really need to do better within our health care systems to support queer and trans families," explained principal investigator Molly Altman.

An associate professor in the School of Nursing and a nurse midwife, Altman developed an interest in respectful approaches to reproductive health care while working on her postdoctoral fellowship. She was curious about "specifically looking at ways that we can address the interpersonal racism and oppression that happens within the health care system" and barriers marginalized communities encounter when seeking pregnancy care.

While there's a large body of research on reproductive health, it's rarely conducted through this lens. There are numerous reasons for this: One, said Altman, "is how we measure gender." Even at well-regarded research institutions, moving away from the gender binary — or even acknowledging multiple interlocking layers of oppression — can be rare, and it can be challenging to get funding for research on communities who have historically experienced harm. "The snarky side of me will probably say, well, when you live in a very white cisgender-centered patriarchal society, then experiences of those who don't fit within the dominant systems are not going to be centered or focused upon in research," said Altman.

The goal of Birth Includes Us is to change that — and to set a precedent for future research. The study is rooted in a practice called community-based participatory methods, which means it's focused on the lived experiences of the communities it's centering, and community members have influence on the way the research takes shape. "The reality is that people who carry lived experience and the people who are on the ground within their communities are the ones who actually carry all the knowledge," said Altman. "They are the experts in all of this."

While the study centers pregnancy, it's inclusive of all pregnancy outcomes, and it will document experiences participants report with birth, stillbirth, pregnancy loss, surrogacy, and abortion. That last component is especially important, because, as an international study spanning the United States, Birth Includes Us will be able to document disparities in the quality of care families report based on geography.

Even before Roe v. Wade was overturned, reproductive health care access was deeply varied from state to state. With Roe gone, those differences have only grown more entrenched, and are likely to have a disproportionate impact on people who already face barriers to health care, including queer and trans folks, BIPOC communities, young people, people living in poverty, and folks with disabilities. In this sense, Birth Includes Us will be a critical document of the post-Roe era.

Currently, Altman and her colleagues are wrapping up the pilot study of a survey they've been working on for a year and a half. Next, they'll examine the data over the fall and winter, with the goal, eventually, of fully implementing the survey across the United States and Canada, with a response rate in the thousands to give "a robust look at queer and trans families' experiences of pregnancy," she said. Results from the international survey will be brought back to the community at its conclusion as a tool for change.

While the study represents a huge step forward for medical research that's more reflective of queer and trans communities and their experiences, and Altman says she's seen some shifts in pregnancy care that are making it more inclusive, systemic change is slow. In the meantime, families from BIPOC and LGBTQ communities seeking pregnancy care will still experience institutional heterosexism, racism, and transphobia. Support from doulas and other advocates can help, said Altman. And in Washington State, doula support is in the process of becoming more equitable through the work of the Doulas for All Coalition, which, like Birth Includes Us, is an example of the change that community-centered advocacy rooted in reproductive justice can achieve.

"I have to say my biggest piece of advice is if you feel like you may be unsafe within the health care setting, doulas are absolutely wonderful people to be an advocate for you or just make sure you have someone who you trust who can be there and speak up for you and potentially be a buffer to some of the potential harm that may happen," said Altman. "Unfortunately, there's a lot in the system that will take a long time to change. And so having your people and your community and your support around you, especially during pregnancy experiences, is invaluable."

For families interested in participating in the study's final phase, more information is available at the Birth Includes Us website.

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