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Research ArticleOriginal Research

A Qualitative Study of Primary Care Physicians’ Approaches to Caring for Adult Adopted Patients

Jade H. Wexler, Elizabeth Toll and Roberta E. Goldman
The Annals of Family Medicine January 2025, 23 (1) 24-34; DOI: https://doi.org/10.1370/afm.240146
Jade H. Wexler
The Warren Alpert Medical School of Brown University, Providence, Rhode Island
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  • For correspondence: jade_wexler@brown.edu
Elizabeth Toll
The Warren Alpert Medical School of Brown University, Providence, Rhode Island
MD
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Roberta E. Goldman
The Warren Alpert Medical School of Brown University, Providence, Rhode Island
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  • Addressing Hidden Histories of Donor-Conceived Adults
    Rebeca Tenajas and David Miraut
    Published on: 02 March 2025
  • Beyond Pediatrics, Towards Lifelong Care for Adopted Adults
    Rebeca Tenajas and David Miraut
    Published on: 17 February 2025
  • Published on: (2 March 2025)
    Page navigation anchor for Addressing Hidden Histories of Donor-Conceived Adults
    Addressing Hidden Histories of Donor-Conceived Adults
    • Rebeca Tenajas, Medical Doctor, Master in Medicina Clínica, Family Medicine Department, Arroyomolinos Community Health Centre, Spain
    • Other Contributors:
      • David Miraut, Independent Researcher

    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 mis...

    Show More

    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...

    Show Less
    Competing Interests: None declared.
  • Published on: (17 February 2025)
    Page navigation anchor for Beyond Pediatrics, Towards Lifelong Care for Adopted Adults
    Beyond Pediatrics, Towards Lifelong Care for Adopted Adults
    • Rebeca Tenajas, Medical Doctor, Master in Medicina Clínica, Family Medicine Department, Arroyomolinos Community Health Centre, Spain
    • Other Contributors:
      • David Miraut, Independent Researcher

    Dear Editor,

    We read with great interest the article by Wexler et al, “A Qualitative Study of Primary Care Physicians’ Approaches to Caring for Adult Adopted Patients”, which sheds valuable light on how primary care physicians address the needs of a population that frequently lacks comprehensive family medical histories (1). As a family physician and an independent researcher based in Spain, we recognize many parallels between the authors’ findings and the realities encountered in our clinical and investigative work. In this letter, we aim to extend their discussion by focusing on the Spanish context and exploring how these insights might inform further improvements in health care delivery for adult adoptees, as well as for other patients with limited or uncertain family medical backgrounds in Europe.

    Although Spain’s National Health System differs structurally from the system described in the authors’ research, many of the same challenges apply. Most Spanish medical schools do not devote significant time to adoption or to the care of individuals with incomplete family records. Indeed, the curriculum includes only basic instruction on pediatric adoption issues, such as international or domestic adoption processes, leaving the concerns of adoptees in adulthood relatively unexplored. This gap in formal instruction often compels family physicians to rely on personal experiences or general clinical guidelines. Such reliance can be particularly limiting when carin...

    Show More

    Dear Editor,

    We read with great interest the article by Wexler et al, “A Qualitative Study of Primary Care Physicians’ Approaches to Caring for Adult Adopted Patients”, which sheds valuable light on how primary care physicians address the needs of a population that frequently lacks comprehensive family medical histories (1). As a family physician and an independent researcher based in Spain, we recognize many parallels between the authors’ findings and the realities encountered in our clinical and investigative work. In this letter, we aim to extend their discussion by focusing on the Spanish context and exploring how these insights might inform further improvements in health care delivery for adult adoptees, as well as for other patients with limited or uncertain family medical backgrounds in Europe.

    Although Spain’s National Health System differs structurally from the system described in the authors’ research, many of the same challenges apply. Most Spanish medical schools do not devote significant time to adoption or to the care of individuals with incomplete family records. Indeed, the curriculum includes only basic instruction on pediatric adoption issues, such as international or domestic adoption processes, leaving the concerns of adoptees in adulthood relatively unexplored. This gap in formal instruction often compels family physicians to rely on personal experiences or general clinical guidelines. Such reliance can be particularly limiting when caring for adults who, like the patients described by Wexler et al, face not only unknown genetic risks but also potential emotional consequences tied to adoption. Research examining international adoption trends in Europe notes the complexity of legal and cultural contexts, underscoring the necessity for health professionals to be better informed (2).

    One of the most striking points in Wexler et al’s study is how the participating physicians perceived parallels between adults who were adopted and individuals who are immigrants or refugees. In Spanish primary care, refugees, asylum seekers, and migrants often present with incomplete health records, which makes family history collection challenging (3). Like adoptees, these patients may be unable to trace genetic predispositions or hereditary disorders, requiring physicians to adopt broader strategies for disease prevention and screening. In our experience, this approach typically includes adjusting the threshold for certain diagnostic tests and relying more on population-based risk profiles rather than specific familial patterns. These parallels illustrate the broader applicability of Wexler et al’s analysis, suggesting that improved training on adoption-related issues could concurrently benefit other groups with unknown or unreliable family information.

    We also appreciate Wexler et al’s emphasis on mental health. In Spain, most family physicians coordinate closely with psychologists and psychiatrists, but there is a documented shortage of mental health professionals who specialize in adoption-specific issues. Studies have shown that adoptees may be at increased risk of suicidal behavior and other mental health challenges, thus highlighting the importance of specialized care (4). Yet, as the authors note, many physicians are unaware of the potential role of adoption itself as a source of underlying trauma. Several clinicians may assume that early-age adoption removes any meaningful psychological impact. Research on adoption and mental health, however, indicates that subtle yet persistent factors—such as loss of biological ties, identity concerns, or prior adverse experiences—can carry forward into adulthood (5). Our observations in Spain align with these findings, as adult patients sometimes present with unexplained anxiety or depression, only later revealing a complex adoption background that was never addressed in earlier medical encounters.

    In clinical settings, addressing these psychosocial considerations can be as critical as managing physical health. For instance, adult adoptees often report frustration when repeatedly questioned about a family history they do not know, a frustration also noted by Wexler et al. Their study suggests the value of clarifying “adoptive” versus “biological” relatives in medical interviews, which can reduce confusion and avoid potential microaggressions. This point resonates with Spanish family medicine, where we strive to incorporate culturally sensitive language and practices, yet still encounter system-level barriers like standardized questionnaires and electronic health record fields that fail to differentiate between adoptive and biological family trees. Adapting these standardized tools can improve patients’ sense of being understood, which may, in turn, encourage more open communication regarding mental health concerns and perceived stigmatization (6).

    Another area that merits deeper exploration is genetic testing. Direct-to-consumer testing has recently gained popularity in Spain, but many patients and physicians remain unclear about its limitations. Wexler et al discuss how primary care physicians in their study felt uncertain about the clinical utility, accuracy, and potential insurance implications of such tests. Our observations are comparable: without formal guidelines, family physicians in Spain find themselves discussing risks and benefits on a case-by-case basis, often without support from genetic counselors. This situation is further complicated by legal frameworks that vary among different Autonomous Communities, especially with respect to data privacy and the possibility of contacting biological relatives. Professional recommendations on when and how to employ genetic testing for adult adoptees could bring more clarity, especially in the context of diseases with significant hereditary components (3).

    Practical screening protocols also warrant attention. The ambiguity surrounding family history leaves clinicians uncertain whether to recommend early imaging or more intensive follow-up. Some colleagues propose earlier screenings for conditions such as breast or colon cancer in adoptees, whereas others rely on the general population-based schedules. Although little evidence directly addresses whether these adjusted screening regimens reduce morbidity or mortality in adoptees, the question warrants further study. With more robust data, it might become possible to create standardized approaches that allow clinicians to balance the risk of overtesting with the potential cost of delayed diagnoses.

    Furthermore, ethical and legal considerations play a significant role when attempts to access an individual’s biological family history conflict with privacy regulations. In Spain, adoption records are generally sealed, yet a complex mosaic of regional laws can dictate how and under what circumstances these records might be unsealed. Similar to the issues raised by Wexler et al, Spanish physicians often find themselves in a position of wanting more biological data to inform screening or treatment plans, but are constrained by privacy rules designed to protect all parties involved. While respect for legal boundaries is paramount, collaboration with social service agencies and, when appropriate, legal advisors can sometimes open narrow paths for obtaining partial information. Such collaboration could be beneficial not only for adoptees but also for health professionals striving to provide optimal care (6).

    Finally, we believe that the core message of the article—that training for physicians regarding adult adoptees is minimal—applies broadly across our health system. Here in Spain, some efforts focus on foster children, but there is limited attention to those who enter adulthood and remain vulnerable due to unknown hereditary factors. It seems prudent for our academic institutions and professional societies to incorporate adoption-specific modules into training, similar to calls for enhanced instruction in other underrepresented areas of medicine (2). This could involve teaching family physicians the language and sensitivity required to take a nuanced patient history, ways of addressing mental health needs that may arise from ambiguous losses, and strategies for responsibly discussing genetic testing when family history is missing.

    In conclusion, the work of Wexler et al provides an insightful, methodologically sound view into a topic that extends beyond the United States. We share their stance that adult adoptees have distinct needs in primary care, and we agree that current medical education leaves many clinicians uncertain how best to meet these needs. Our experiences in Spain corroborate their findings, highlighting parallel issues with refugees, migrants, limited mental health resources, and the challenges of incomplete family records. We commend the authors for drawing attention to a population that has not been sufficiently represented in the medical literature, and we hope that further studies will build on this foundation by examining how evidence-based guidelines, training programs, and policy reforms can ultimately lead to more consistent and compassionate care for adult adoptees around the world.

    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. Selman P. The rise and fall of intercountry adoption in the 21st century. Int Soc Work. 2009 Sep 1;52(5):575–94.
    3. Qureshi N, Santaguida P, Carroll J. Collection and use of cancer family history in primary care. Agency for Healthcare Research and Quality (AHRQ); 2007. (Evidence Report / Technology Assessment).
    4. Keyes MA, Malone SM, Sharma A, Iacono WG, McGue M. Risk of Suicide Attempt in Adopted and Nonadopted Offspring. Pediatrics. 2013 Oct 1;132(4):639–46.
    5. Farr RH, Grotevant HD. Adoption. In: APA handbook of contemporary family psychology: Foundations, methods, and contemporary issues across the lifespan, Vol 1. Washington, DC, US: American Psychological Association; 2019. p. 725–41. (APA handbooks in psychology®).
    6. Borders LD, Penny JM, Portnoy F. Adult Adoptees and Their Friends: Current Functioning and Psychosocial Well-Being. Fam Relat. 2000;49(4):407–18.

    Show Less
    Competing Interests: None declared.
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A Qualitative Study of Primary Care Physicians’ Approaches to Caring for Adult Adopted Patients
Jade H. Wexler, Elizabeth Toll, Roberta E. Goldman
The Annals of Family Medicine Jan 2025, 23 (1) 24-34; DOI: 10.1370/afm.240146

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A Qualitative Study of Primary Care Physicians’ Approaches to Caring for Adult Adopted Patients
Jade H. Wexler, Elizabeth Toll, Roberta E. Goldman
The Annals of Family Medicine Jan 2025, 23 (1) 24-34; DOI: 10.1370/afm.240146
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