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Dear Editor,
We read with interest the article by Wexler et al, “A Qualitative Study of Primary Care Physicians’ Approaches to Caring for Adult Adopted Patients” (1), and found its emphasis on the complexities surrounding family medical history notably pertinent to another group whose genetic origins may be elusive: individuals conceived through in vitro fertilization (IVF) with donor gametes. Although the original study focuses on adult adoptees with limited family medical history (LFMH), the points raised by Wexler et al parallel concerns likely to emerge as donor-conceived individuals form a growing fraction of the adult population. In Spain, our experience in primary care indicates that many such individuals are unaware they were conceived through gamete donation, and consequently, they often present or record an inaccurate family history that may complicate disease prevention, diagnosis, and clinical decision-making.
One critical issue, highlighted by Wexler et al, is how absent or unreliable family records can influence screening practices. In the case of donor conception, incomplete family history might prompt either excessive or insufficient medical testing. Similar uncertainties have been described in the literature on assisted reproduction, especially when donors remain anonymous by law (2). The situation can be particularly complicated when donor-conceived adults assume, or are led to believe, that the parental family history is their own. This misunderstanding may compromise accuracy in genetic risk assessments, prompting clinicians to pursue workups based on an erroneous lineage. We have observed that, much like adult adoptees, donor-conceived adults may not receive proper screenings if clinicians take family history at face value.
Another area of convergence between the experiences of adopted individuals and donor-conceived adults concerns emotional well-being. The anxiety generated by discovering one’s donor origin can be analogous to the identity challenges adoptees face (3). Wexler et al note the potential for shame or discomfort when family history is repeatedly mentioned in clinical settings. In our view, such repeated inquiries can also be distressing for donor-conceived adults once they learn, later in life, that their reported family data are unrelated to their true genetic background. These individuals may require access to mental health services capable of addressing the unique mix of identity-related stressors and potential grief over missing genetic information, an approach also advocated in a recent letter also discussing adult adoptees’ psychological challenges (4).
In addition, Wexler et al’s reference to direct-to-consumer genetic testing resonates strongly with donor-conceived individuals. As these tests gain popularity, unsuspecting adults may inadvertently learn of donor conception. This revelation can create tensions in the physician–patient relationship if the patient perceives prior medical guidance as incomplete or misleading. Studies note that an increasing number of people discover donor origins through third-party genetic databases, sometimes without the foreknowledge of their families (5–7). Consequently, primary care physicians might benefit from more detailed guidelines on how to counsel patients who face this discovery, particularly regarding risk assessment and emotional support.
Primary care in Spain, as in other countries, is grounded in a biopsychosocial model that emphasizes continuity of care and integral patient management. However, this model presupposes that family medical histories can be pieced together reliably over time. The anonymity surrounding donor conception in many jurisdictions challenges that premise (2). Medical records usually lack a systematic way to flag that an individual may have been conceived via donor gametes, especially if the patient is unaware of this aspect of their origin. As such, we propose incorporating questions about assisted reproduction into patient intake interviews when clinically relevant, while acknowledging the ethical concerns about privacy and a patient’s right not to know. This approach is similar to that suggested for adoptees, recognizing that either group’s family histories may be incomplete (4).
In line with Wexler et al’s suggestion of better physician education, primary care providers may need more formal training in the social, legal, and psychosocial aspects of gamete donation. Recent research has identified knowledge gaps among providers regarding how best to counsel donor-conceived families (8,9). This training should include instruction on appropriate terminology, distinguishing genetic from non-genetic parentage, and an awareness of the emotional dynamics that can emerge if patients uncover incongruities between their presumed and actual genetic risk factors. It should also address strategies for discussing donor conception without undermining family cohesion. While Wexler et al concentrate on the microaggressions that can inadvertently occur with adoptees, those same pitfalls may arise when clinicians ask about parents’ health histories in a manner that implicitly assumes genetic ties.
Furthermore, ethical and legal considerations must be handled carefully. The confidentiality clauses in Spain and other European countries generally protect donor anonymity, and patient autonomy is very important. These norms can collide with clinical need when a physician suspects that family history is incongruent with genetic reality. We have encountered situations where patients remain oblivious to their donor origins, yet they present with potential hereditary conditions that might require a more precise understanding of genetic predispositions. Similar concerns surface in the adoption context, as Wexler et al discuss, where regulatory barriers often prevent the free exchange of biological family information. The parallel underlines the importance of cross-disciplinary collaboration with genetic counselors, psychologists, and, where relevant, legal experts.
In conclusion, we believe Wexler et al’s qualitative insights transcend the issue of adoption and speak to broader concerns about incomplete genetic histories. The parallels with donor-conceived adults suggest a shared need for heightened sensitivity, improved communication strategies, and carefully considered screening protocols in primary care. As assisted reproductive technologies continue to evolve, and as more children conceived via donor gametes reach adulthood, the points raised in this article will likely hold increasing relevance. We echo the authors’ call for enhanced training, expanded resources, and deeper research on how best to offer comprehensive care to individuals whose genetic identities may be only partially known.
REFERENCES
1. Wexler JH, Toll E, Goldman RE. A Qualitative Study of Primary Care Physicians’ Approaches to Caring for Adult Adopted Patients. Ann Fam Med. 2025 Jan 1;23(1):24–34.
2. Jones C, Frith L, Blyth E, Speirs J. The Role of Birth Certificates in Relation to Access to Biographical and Genetic History in Donor Conception. 2009 Jan 1 [cited 2025 Mar 2]; Available from: https://brill.com/view/journals/chil/17/2/article-p207_2.xml
3. Kirkman M. Genetic connection and relationships in narratives of donor-assisted conception. Aust J Emerg Technol Soc [Internet]. 2004 [cited 2025 Mar 2];2(1). Available from: https://research.monash.edu/en/publications/genetic-connection-and-relat...
4. Tenajas R, Miraut D. Beyond Pediatrics, Towards Lifelong Care for Adopted Adults. Ann Fam Med. 2025 Feb 17;23(1):eLetter. Available from: https://www.annfammed.org/content/beyond-pediatrics-towards-lifelong-car...
5. Readings J, Blake L, Casey P, Jadva V, Golombok S. Secrecy, disclosure and everything in-between: decisions of parents of children conceived by donor insemination, egg donation and surrogacy. Reprod Biomed Online. 2011 May 1;22(5):485–95.
6. Nachtigall RD, Becker G, Quiroga SS, Tschann JM. The disclosure decision: Concerns and issues of parents of children conceived through donor insemination. Am J Obstet Gynecol. 1998 Jun 1;178(6):1165–70.
7. Golombok S. Disclosure and donor-conceived children. Hum Reprod. 2017;32(7):1532–6.
8. Iranifard E, Ebrahimzadeh Zagami S, Amirian M, Ebrahimipour H, Latifnejad Roudsari R. A systematic review of assisted and third-party reproduction guidelines regarding management and care of donors. Reprod Health. 2024 Jun 1;21(1):75.
9. Van den Broeck U, Josephs L. Counseling Nonidentified Gamete Donors. In: Covington SN, editor. Fertility Counseling: Clinical Guide [Internet]. 2nd ed. Cambridge: Cambridge University Press; 2022 [cited 2025 Mar 2]. p. 106–14. Available from: https://www.cambridge.org/core/books/fertility-counseling-clinical-guide...