Filling in the blanks on adoptees' medical history

For many people, filling out paperwork about their family's health history is a routine part of a medical visit. For adopted people like Ramya Gruneisen, it's impossible.

"We don't have any information about my biological mom or dad, so there's quite literally nothing to go off of," said Gruneisen, who was born in India and adopted by a couple in St. Louis. At times, she's just drawn a line straight through columns of family history questions. She doesn't even have to read them.

"It's not like we can contact birth parents and request medical records," said Gruneisen, a public health worker who speaks and writes regularly about adoption.

Lack of such knowledge is a common situation for adopted people, one that's layered in legal, medical and personal matters. But Gruneisen and other experts say that adoptees, adoptive parents and health professionals can take steps to help the situation – starting with acknowledging that there is a situation.

"The challenge is that once a child is adopted, there's this notion that everything that happened before the adoption doesn't exist or it's been erased. And that's just not the case," said Dr. Elaine E. Schulte, vice chair of academic affairs and faculty development at the Children's Hospital at Montefiore in the Bronx borough of New York City.

Many health organizations, including the American Heart Association and American Medical Association, emphasize the importance of family history. The Centers for Disease Control and Prevention encourages gathering family medical records, death certificates and other information from all kinds of relatives. The surgeon general provides a tool for doing so. Family history even has its own holiday: Thanksgiving is also National Family Health History Day, where families are encouraged to talk about health.

An adoptee with no information can take part in none of it.

Schulte, who also is a professor of pediatrics at Albert Einstein College of Medicine and medical director of its adoption program, acknowledged that adoptees aren't the only people who might lack full details about their family history tree. But, she said, adoption is unique. "People who are adopted were born to other people than people who are caring for them. They have a whole set of biologic family and relatives that they may never, ever know."

The exact number of adoptees in the U.S. is not reliably tracked. In July, the Washington Post estimated that 1% to 3% of Americans under the age of 18 are adopted. A 2020 American Academy of Pediatrics report on adoption, which Schulte helped write, used an estimate of 2.1 million adopted children, which wouldn't include adult adoptees.

Access to family history will vary depending on each adoptee's circumstances, said Dr. Julian K. Davies, co-director of the Center for Adoption Medicine at the University of Washington in Seattle.

International adoptions often involve children with either no known biological family history or "some skimpy details of uncertain reliability," said Davies, who also is a clinical professor of pediatrics and a practicing pediatrician whose patient population consists of mostly adoptees.

Most domestic adoptions today are open, which means birth and adoptive families are able to communicate with one another. But from the mid-20th century until the 1980s, adoptions were more likely to be closed, where birth parents' and adoptees' identifications were not shared. Many states still keep adoption records and unamended birth certificates sealed, although some have taken steps toward openness.

The foster care system can add another layer of personal and legal barriers for people adopted that way, Davies said.

The role of adoptive parents

The effort to acquire as much family medical information as possible can start early in the process. Families traveling abroad should ask questions on site, Schulte said. "It may be your only chance to get as much as you possibly can."

At adoption programs such as the ones she and Davies lead, doctors can counsel adoptive parents on what to ask. Davies' program also suggests details for agencies to gather, but most agencies already have collected what they can. "It's rare that we ask these questions and then magically unlock a trove of biological family history," he said.

Asking questions early is important in open adoptions, too, because levels of communication can change over time, Schulte said. But when possible, Davies said, adoptive parents can reach out to not just birth parents but biological grandparents or other relatives.

As a child ages, Schulte – mother of two daughters adopted from China – emphasized the need for honest, open and age-appropriate conversations about what information is and isn't known. "You have to be a really good listener and detective and know your child," she said. It's also important to acknowledge a child's emotions as they're expressed.

Gruneisen said that adoptive parents and pediatricians can work with children so they're ready to take ownership of their health when they reach adulthood.

And if there's a way for adoptive parents to help their children connect with their biological family and obtain a medical history, "that needs to be prioritized, no matter how uncomfortable it makes the parents," she said. "It's a priority to ensure that adoptees have access to their medical history."

Looking for answers

Adult adoptees can sometimes piece together details of their history by examining their own files or checking with the agencies their parents worked with. Some states offer registries that provide an opportunity for birth parents and adoptees to connect if both are interested. That rarely happens, Schulte said.

So adoptees sometimes look to genetic testing to deliver answers. Gruneisen tried a consumer-oriented test that over the years has repeatedly shifted its answers on her precise heritage.

Davies understands why people would be curious. But given concerns about accuracy and privacy, he said such direct-to-consumer tests should be approached with caution. That said, he's aware of nonprofit organizations that have helped adoptees from China connect with birth families through such tests.

Genetic testing for a specific medical condition can be tricky to navigate, Davies said. In young children, the advice often is to wait.

"If it's not going to be something likely to show up in childhood in a way that we can do something about it, then generally, the genetics ethics specialists recommend that, if possible, we hold off," he said. As a young adult, patients can make their own decisions about what they want to learn.

For cases where family history or symptoms hint at the need for such testing, Davies recommended working with genetics counselors, who are trained in guiding people through the issues, which can be thorny.

Davies said the lack of family history might influence the likelihood he'd order other types of tests, such as screening for a rare form of high cholesterol.

The health care system

Health care professionals need awareness of and empathy for adoptees, said Dr. Julia Small, a pediatric and internal medicine resident at the University of Colorado School of Medicine in Aurora.

Small, who was born in China and adopted by parents in Massachusetts, was lead author on a report about adoption and health care for the National Council for Adoption, a nonprofit advocacy group. Gruneisen and Schulte were her co-authors.

Small also has surveyed adult adoptees to understand their health care experiences. Although the study pool was limited and the results are preliminary, Small said, many participants talked about how difficult it was to not have family history information and said they feel as if they are treated differently in health care settings.

It's not always just problematic paperwork. Gruneisen once had a doctor who, upon learning she was adopted, said, "You probably want to know your real family, because blood is thicker than water." Other times, nurses have looked at cholesterol results and said, "Oh, your parents must be so healthy!" And all she can do is shrug.

Happily, Gruneisen's current primary care physician is sensitive to her adoption experience and helpful with her questions. But she and Small said that physicians should be mindful of how they talk about family history and recognize, as Small said, that "not all families are biologically related to themselves, that families come together in many different ways."

Small also recommended making sure forms make it easy to indicate that someone doesn't have their family medical history, so patients aren't confronted with those questions over and over.

"I think inherently, when we have to leave an entire sheet blank, there's something that 'others' us from the general population," Gruneisen said.

Davies has heard similar feedback from the families he works with. In dealing with patients who are frustrated by their lack of knowledge, he said it's important for doctors to acknowledge the sense of frustration, loss or grief that can come from not having information that most other people have.

"In a bit more of a reassuring direction," he also tells families that even without family history, "I also can absolutely provide great care to you and address issues that come up for you."

Perspective

As helpful as family history is, Schulte said, the key advice is the same regardless of hereditary risk. Someone worried about a family history of heart disease, for example, would be advised to practice healthy habits, such as eating right, getting plenty of exercise and enough sleep.

Small was adopted through a now-closed agency and has no information about her birth family. But her own medical training has reassured her about the gaps in her past. "I certainly won't say that I haven't had moments of feeling anxious, like, 'Oh, is this the time that I'm going to have this rare disease?'" In general, though, she doesn't worry about what she doesn't know.

But health care teams need to be aware that for adopted people, such issues run deeper than disease risk, she said. "Family history tends to be a part of your self-narrative, or your identity, and it speaks to this time where you didn't really know what happened."