Research priorities within LGBTQIA+ perinatal care: results of a priority setting partnership

For decades, the story of pregnancy and new parenthood in medical textbooks and hospital wards has been written with a single, narrow cast of characters: a cisgender woman and a male partner. This assumption shapes everything from the forms patients fill out to the questions doctors ask and the support groups that exist. But the reality of who is becoming a parent is far more diverse. In the United Kingdom, the number of people identifying as lesbian, gay, bisexual, transgender, queer, intersex, or asexual who are giving birth has risen sharply, with recent data suggesting that roughly one in twenty birthing people now falls into these categories. Despite this growing population, the healthcare system often remains ill-equipped to meet their specific needs. People with these identities frequently face structural barriers, discrimination, and a lack of understanding from providers, which can lead them to avoid care or experience worse health outcomes. When a system is designed for a population that does not match the people walking through its doors, the result is often confusion, distress, and preventable harm.

To address this gap, a team of researchers, clinicians, and people with lived experience came together to ask a fundamental question: what do we actually need to know to make perinatal care better for LGBTQIA+ families? They did not simply guess or rely on existing academic theories. Instead, they organized a massive, collaborative effort known as a priority setting partnership. This process brought together hundreds of people—both those who have navigated the system as patients and those who work within it as doctors, midwives, and nurses—to identify the most pressing unknowns. The goal was not to conduct a new medical trial immediately, but to map out the landscape of uncertainty. By agreeing on which questions are most urgent, the group aimed to guide future research toward the issues that matter most to the people affected, ensuring that science catches up with the reality of modern families.

The process began with a wide invitation for questions. Over the course of a few months, 366 participants submitted 1,166 distinct questions about fertility, pregnancy, birth, and the year after a baby is born. These questions came from a diverse group: the majority were LGBTQIA+ individuals, but the group also included health professionals, friends, family members, and even gamete donors and surrogates. The researchers then worked to sort through this sea of inquiries. They removed questions that were outside the scope of pregnancy and birth, such as general sexual health unrelated to conception, and grouped similar questions together. This process of refinement turned the 1,166 raw questions into 48 clear, summary questions that captured the collective concerns of the community.

A critical step followed, where the team checked existing scientific literature to see if any of these questions had already been answered. They found that only one question had sufficient evidence to be considered solved: the long-term physical, emotional, and developmental outcomes for children raised in LGBTQIA+ families. The research already confirmed that these children do well. However, for the remaining 47 questions, the evidence was either missing or insufficient. This revealed a stark reality: while we know the children are thriving, we do not yet know enough about the journey of the parents themselves. The vast majority of what these families need to know about their own health, safety, and experience remains a mystery.

To decide which of these 47 unanswered questions were the most important, the team asked the participants to vote. In a second survey, 214 people ranked the questions, selecting their top ten priorities. The researchers paid close attention to ensure that the views of smaller, often marginalized groups within the LGBTQIA+ community were not drowned out by the majority. They looked specifically at how different subgroups—such as transgender and non-binary people, those from racialized minority backgrounds, and health professionals—ranked the issues. This interim ranking helped the team narrow the list down to 24 questions that represented the most urgent needs across the entire spectrum of identities.

The final step took place in a workshop where 20 participants, carefully selected to represent a balance of lived experience and professional expertise, gathered to finalize the list. Through discussion and consensus, they agreed on the top 24 research uncertainties that should drive future study. The number one priority identified by the group was a complex but vital question: how do healthcare responses to the intersection of a person's identities affect their ability to become a parent and receive good care? This question specifically addresses how factors like racism, disability discrimination, fatphobia, or religious bias combine with LGBTQIA+ identity to create barriers. The researchers found that understanding these overlapping forms of discrimination is the single most critical area for investigation.

Following this top priority, the next most urgent areas of inquiry included defining what truly inclusive care looks like in practice, determining the specific training healthcare professionals need to support LGBTQIA+ families, and understanding the impact of puberty blockers and gender-affirming hormones on fertility and pregnancy outcomes. The list also highlighted the need for better mental health support tailored to these families, the investigation of perinatal outcomes like miscarriage and birth complications, and the emotional labor parents face just to access services. Other significant topics included the experiences of surrogacy, the impact of parental titles on birth certificates, and the challenges of inducing lactation for non-gestational parents.

The paper concludes that this list of 24 questions serves as a vital roadmap. It is not a final answer, but a clear direction for where the scientific community must look next. By focusing research on these specific uncertainties, the hope is that future studies will generate evidence that clinicians can use to improve care immediately. The process itself demonstrated that when people with lived experience and health professionals work together as equals, they can identify blind spots that neither group could see alone. The result is a set of priorities that reflects the true complexity of LGBTQIA+ perinatal life, moving beyond assumptions to address the real barriers that prevent families from receiving safe, respectful, and effective care.