Physicians lack training to address unique needs of adults with limited family medical history
A Qualitative Study of Primary Care Physicians' Approaches to Caring for Adult Adopted Patients (Wexler, 2025)
Wexler JH, Toll E, Goldman RE. A Qualitative Study of Primary Care Physicians' Approaches to Caring for Adult Adopted Patients. Ann Fam Med. 2025;23:24-34. https://doi.org/10.1370/afm.240146
Note: While this study specifically examines physician approaches to adult adoptees with limited family medical history, the findings represent important parallel evidence relevant to donor-conceived people. As noted in this letter to the editor, both populations share similar challenges, including limited access to genetic history, potential identity considerations, and navigating healthcare systems that often assume biological connections to one's family.
Geographic Region: United States (Minnesota and Rhode Island)
Research Question: How do primary care physicians approach caring for adult adopted patients with limited family medical history, particularly regarding mental health needs, family medical history-taking, and genetic testing?
Design: Hour-long semistructured qualitative interviews incorporating hypothetical clinical vignettes conducted from July 2022 through January 2023 via Zoom. Purposive, criteria-based, reputational sampling of primary care physicians from Minnesota and Rhode Island. Template organizing method for coding and Immersion-Crystallization for analysis, with an iterative multistage approach that allowed detection of data saturation
Sample: 23 primary care physicians (12 from Minnesota, 11 from Rhode Island). Majority were academic family medicine physicians who had practiced for several decades (mean: 27.4 years). Most practiced in academic settings (44%) or nonprofit organizations (30%). Nearly all reported having cared for adopted patients, though most believed adoptees constituted a very small subset (~5%) of their patient population. 17 (74%) reported being close to someone who was adopted. 20 (87%) reported being close to someone with limited family medical history. 8 (35%) were parents who had adopted children.
Key Findings
Most primary care physicians reported receiving little to no training or resources on adult adoptees with limited family medical history throughout their medical education and showed substantial knowledge gaps.
Primary care physicians demonstrated knowledge gaps regarding preventive screening and genetic testing for adoptees with limited family medical history, with some assigning adoptees to "average risk" for screenings while others had lower thresholds for earlier screening.
Most physicians reported uncertainty about best practices and standards of care for adult adoptees with limited family medical history.
Nearly all primary care physicians expressed that additional training would be beneficial, particularly regarding preventive screening, genetic testing, and discussing adoption sensitively.
The majority recognized some relationship between adoption and mental health issues, but many failed to refer patients to adoption-competent mental health resources.
Primary care physicians were divided on whether adoption itself was inherently traumatic, with one-third believing it was traumatic even for those adopted as young children.
Most primary care physicians obtained family medical history imprecisely, potentially contributing to miscommunication, patient anxiety, microaggressions, and strain on the therapeutic relationship.
Physicians with personal connections to adoption (particularly adoptive parents) drew on these experiences to inform their clinical approach.
Limitations
The study did not attempt to characterize or differentiate the experiences of different subgroups of adoptees (international vs. domestic, various ages at adoption, etc.).
The sample overrepresented academic primary care physicians with personal connections to adoption, who were likely more aware of adoption-related health care implications than the average physician.
The sample included very few resident physicians (only one), underrepresenting the trainee perspective.
The sample was heavily weighted toward family medicine physicians (74%) with fewer internal medicine physicians.
No advanced practice providers (physician assistants or nurse practitioners) were included despite comprising more than half of all primary care clinicians.
While interview questions focused on adopted adult patients, physicians often discussed experiences with adopted children.
Applications: Findings may inform care approaches for donor-conceived individuals who also face challenges with limited family medical history and similar identity considerations. Research highlights the need for health professionals to better understand the needs of people who lack complete genetic history information.
Funding Source: The study was supported by the 2022 Summer Assistantship provided by the Warren Alpert Medical School of Brown University.
Lead Author: Jade H. Wexler is a medical student at the Warren Alpert Medical School of Brown University who has qualitative interview experience and is also an adoptee.
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 federal laws prohibiting anonymous donation.
Some states have enacted their own laws regarding aspects of assisted reproduction, and parentage, but these vary widely.