6 - What to Expect When You Don’t Know If You’re Expecting: Best Practices for Discussing Pregnancy Status and Testing with LGBTQIA+ Individuals

Background:  Pregnancy testing is a common risk minimization procedure in clinical research. However, pregnancy can be a fraught topic for many, especially LGBTQIA+ folks. Little guidance is available on the best way to discuss pregnancy testing and status with this population, in a way that is affirming and achieves risk minimization.

Methods:  A qualitative case study methodology using purposeful and snowball sampling was used to interview 12 LGBTQIA+ individuals regarding their experiences discussing pregnancy status and testing with healthcare providers. Inductive data analysis methods were used to analyze data collected. Themes emerged from data collected.

Conclusion:  When pregnancy discussions occurred, this forced participants to be faced with a choice: to out themselves in a space that may not be safe, or to not disclose their identity, and risk negative health outcomes. Gendered assumptions about pregnancy often resulted in the creation of a climate for participants that felt exclusionary and unsafe. These discussions resulted in microaggressions that culminated into larger harms, such as severe gender dysmorphia and emotional distress. This led to health care avoidance on the part of this population, and had consequences for their overall physical and mental health. Discussions about pregnancy should be accomplished in a gender-inclusive way.

Limitations: This study is qualitative in nature and therefore may not be generalizable to larger populations. Purposeful and snowball sampling strategies further limit the generalizability. The data collected for this study focused on LGBTQIA+ participants in the Pacific Northwest. In addition, neither healthcare professionals nor research investigators were included in the study.

Discussion:  Discussing pregnancy status and testing with LGBTQIA+ participants provided us with information to provide to the larger ethics community. In the context of IRB review, guidance for analysts and members should consider a broader risk minimization plan. Our guidance based on this research will be shared with the PRIM&R and healthcare community. The topic of pregnancy should be approached from a nuanced perspective that affirms identities and lived experiences, and which empowers participants. Future work includes drawing from a population of participants outside of the Pacific Northwest.