How Medicine Fails Adopted Adults

Jade Wexler was a teenager when she first realized her experience at the doctor’s office was different from that of her peers.

Sitting in her pediatrician’s waiting room, she was handed a standard medical intake form, filled with routine questions about her family’s health history. But as an adopted child with no access to that information, she was left with a dilemma: Should she leave the section blank or make an awkward attempt to explain herself?

“I wasn’t quite fitting the mold of a patient, I think, that my clinicians were expecting me to be,” she recalled. She eventually asked the receptionist if she should leave the section blank because she was adopted.

Years later, as a medical student at Brown University in Providence, Rhode Island, Wexler encountered the same issue from the other side of the exam room.

“I was learning from other doctors how to collect medical history, and it struck me how little guidance there was on what to do when a patient simply doesn’t have that information,” she said. “Someone just said offhand, ‘Oh, just be sensitive.’ But what does that actually mean?”

That question led Wexler, in her fourth year at medical school, to lead a study on how primary care clinicians care for adults who were adopted and have limited family medical history. She and her colleagues interviewed 23 primary care physicians from Minnesota and Rhode Island, incorporating hypothetical clinical vignettes of encounters with adopted patients.

“The medical community thinks about the term adopted as something that only applies to children,” she said.

The study, published in Annals of Family Medicine, found clinicians often lack both training and awareness when treating adults who were adopted as children, leading to potential gaps in preventive care, adverse health outcomes, and negative experiences that can alienate patients. Some adoptees turn to consumer genetic testing, leaving their clinicians to interpret results.

Many clinicians expressed uncertainty about how to adjust screening protocols and mental health assessments for patients lacking biological family history, according to the study.

“Until we had this discussion, I never even thought of this as something missing in our education — but it is,” one physician participant reported.

Julia Small, MD, a pediatric resident at the University of Colorado Anschutz Medical Campus in Aurora, Colorado, and a researcher who was also adopted, echoed these concerns.

“I started looking more into the literature, and there really is almost no guidance — especially for adults — on how to address this,” Small said.

Small presented research last year at the annual conference of the American Academy of Pediatrics showing that more than 85% of the 205 adult adoptees surveyed reported they felt stress due to their lack of family medical history and that their care was negatively affected by clinicians’ lack of knowledge or attention to their adoption status.

“Providers either continued to ask about information they didn’t have or forgot they didn’t have it, reinforcing the idea that they were missing something essential,” she said.

A Call for Clinical Guidelines

An estimated five million Americans are adopted, according to the Adoption Network, a national organization that provides family adoption services. A survey from the Dave Thomas Foundation for Adoption in 2022 found 1 in 10 adults in the United States said they were adopted as children. However, no standardized medical training or clinical guidelines exist on caring for this population. Researchers like Wexler said the lack of guidance has real consequences.

One study published in the journal Pediatrics found adoptees were 3.7 times more likely to report an attempted suicide than their nonadopted peers. Mental health care for adoptees remains inconsistent, with many clinicians unaware of the unique psychological complexities adoption can bring, the research showed.

“There’s this grief that can be expressed in a lot of different ways — whether it’s depression, anxiety, or difficulty forming close bonds with others,” said Wexler, who was not involved with the research. “And if a physician isn’t trained to recognize that, they might completely miss what’s going on.”

Adopted adults with limited knowledge of their family history may question how to approach screenings for conditions like cancer with guidelines that change depending on whether an individual has a family history of disease.

“A lot of [adopted] people naturally will worry, what’s the implication of not having that information,” Wexler said. “There’s a lot of medical anxiety.”

With the rise of direct-to-consumer genetic testing kits, many adoptees seek out their own health information. Over two thirds of 1200 adopted adults surveyed by the National Council for Adoption in 2023 said they completed genetic testing to learn more about their ancestry and health implications.

Small warned patients often misinterpret these tests, and they lack the nuance needed to aid clinicians in decision-making. She does not recommend them to her patients because results also often induce anxiety without providing clear answers.

“Physicians need to be prepared to counsel patients on what these results actually mean — especially when an adoptee may be relying on them more heavily than the average patient,” Wexler added.

Genetic databases can open an adoptee to finding birth relatives or birth relatives finding them, which can add to the complexity of testing, said Jennifer Chambers, MD, a pediatrician and medical director of The Adoption and Foster Care Clinic in Hoover, Alabama.

“Not all adoptees want birth family information; others do want this information, but need to process this information with a [genetic] counselor who can guide them well through the discovery process,” Chambers said. “A genetic counselor needs to provide counsel to them prior to making the decision.”

Small Changes, Big Impact

Clinicians and health systems can make a few small changes to improve care for these patients, starting with the intake forms that Wexler found disorienting.

“Most electronic health records don’t even have an option to indicate that a patient is adopted or has limited family medical history,” she said. “That’s an easy fix. Adding checkboxes for ‘Adopted’ or ‘Unknown family history’ could make a world of difference in normalizing the experience.”

Clinicians can also change how they ask about family health history. Instead of assuming patients have access to biological relatives, Wexler suggested starting with an open-ended question like, ‘What do you know about your biological family’s medical history?’

This small linguistic shift acknowledges that not all patients will have the answers, without forcing them to repeatedly disclose their adoption status, Chambers said.

“Clarify which family you are asking for history on,” Chambers added. “Clinicians may be getting information on the adoptive parents who are not genetically linked [to] the patient unless they state that they are asking for information on the birth family.”

Wexler, who graduates from medical school this year, is already working to implement these changes. She developed training modules for medical residents at Brown, outlining best practices for treating adoptees and those with limited family medical history. She said she hopes her continued research will lead to broader institutional reforms, from medical school curricula to continuing education for practicing physicians.

“Adoptees deserve the same level of thoughtful, informed care as any other patient,” she said. “Right now, we’re just not there yet. But we can be.”

The sources in this story reported no relevant disclosures.

Lara Salahi is a health journalist based in Boston.