LGBTQ+ Couples Want Genetic Counseling Support in Family Planning Journey
The biogenetic decision-making processes and perceived utility of genetic counseling amongst LGBTQ couples considering assisted reproductive technology. (Bunkelman, 2025)
Bunkelman, B., Slamon, J., Spencer, S., Allen, S. H., Hornberger, K., & Propst, L. (2025). The biogenetic decision-making processes and perceived utility of genetic counseling amongst LGBTQ couples considering assisted reproductive technology. Research Square. https://doi.org/10.21203/rs.3.rs-5805584/v1
Geographic Region: United States
Research Question: How does biogenetic information influence real-time decision-making processes for LGBTQ+ couples planning to have children through assisted reproductive technology (ART), and how do these couples perceive the utility of genetic counselors in supporting them through the early stages of ART?
Design: Qualitative study using reflexive thematic analysis with a constructivist paradigm. Semi-structured interviews via audio-only Zoom or phone. Participants recruited from Facebook groups for LGBTQ+ individuals trying to conceive. Interviews were conducted August 2021 and January 2022.
Sample: 12 LGBTQ+ participants planning to pursue ART services in the United States. 10 cisgender women, 1 transgender man, and 1 transmasculine/non-binary individual. Predominantly white, educated. Ages ranged from 23-36 years.
Key Findings
Genetic connections mattered differently to different people. Some wanted to pass down their "legacy, heritage, and culture". Others wanted their children to look like both parents. Many wanted their children to be genetically related to each other through using the same donor. Some felt genetic connection wasn't important at all, saying "love is love”.
Health considerations were important. Couples thought carefully about their own and their family's health histories. Many were concerned about mental health history in themselves and potential donors. Some would change their plans based on genetic testing results. Most wanted comprehensive genetic screening of donors.
Some wanted a known donor to have access to health information. Others preferred anonymous donors to maintain boundaries. Many worried about donor limits and how many other families might use the same donor. Finding donors of specific ethnic backgrounds was often challenging.
Every participant wanted to work with a genetic counselor. They wanted both genetic expertise and emotional support. Many wished for support in understanding donor selection. Couples wanted help making complex decisions about testing and screening. Participants desired LGBTQ+ competent care from all providers.
Limitations: Principal investigator was a genetic counseling student, which may have influenced participants' expressed interest in genetic counseling. Only interviewed one member of each couple, potentially missing relationship dynamics. Lack of interest in participation from gay males and transgender individuals.
Applications: Healthcare providers need specific training to understand and address the unique challenges and considerations of LGBTQ+ families. Early intervention by genetic counselors could families make more informed decisions and feel better prepared for the journey ahead. Genetic counselors provide both technical genetic expertise and crucial emotional support. Ongoing support, rather than just one-time consultations, might most beneficial for families.
Funding Source: Northwestern University's genetic counseling program
Lead Author: Brady Bunkelman is affiliated with Advocate Medical Group and conceptualized this research prior to their graduate training as a queer individual interested in contributing to LGBTQ+ family-building research.
Regulatory Context
There are no comprehensive federal laws regulating gamete donation or donor conception in the U.S. The process is largely self-regulated by the fertility industry.
The Food and Drug Administration (FDA) does have some oversight, primarily related to screening and testing of donors for infectious diseases.
The American Society for Reproductive Medicine (ASRM) provides ethical guidelines and recommendations for donation practices. However, these are not legally binding.
There are no legal limits on compensation for donors. A 2011 court ruling (Kamakahi v. ASRM) determined that price caps on donor compensation violate antitrust laws.
ASRM recommends a minimum age of 21 for gamete donors, but this is not legally mandated.
The U.S. does not have laws prohibiting anonymous donation.
Some states have enacted their own laws regarding aspects of assisted reproduction, and parentage, but these vary widely.