International adoption leads to family health mysteries for Minnesotans

Every time Heewon Lee goes to a medical appointment — for a routine physical, or an eye check, or even to get her teeth cleaned — she braces herself for the inevitable question: “What’s your family health history?”

Like most adoptees, Lee doesn’t know whether cancer or high cholesterol runs in her biological family. Sometimes, there’s a checkbox at the end of a lengthy health-history form that she can mark to indicate that she was adopted. Other times, she hands the forms back, blank.

“I’m reminded multiple times a year that I don’t have a family history,” she said — even though there is a note in her medical chart that she is an adoptee. Born in Korea, Lee grew up in a small town in Minnesota. She’s one of over 120,000 Korean adoptees in the U.S., and one of about 10,000-15,000 in Minnesota. In the late 1960s, Children’s Home Society of Minnesota and Lutheran Social Services started organizing Korean adoptions programs. As a result, Minnesota has the highest concentration of Korean adoptees of any state. Subsequent waves of international adoption have led to influxes of children from China, Guatemala, and Ethiopia.

Lee spoke at the International Conference on Adoption Research (ICAR8) in mid-July at the University of Minnesota. The conference has been held annually at different venues for 25 years. More than 200 adoptees from 20 countries attended the weeklong conference, and 60 local adoptees joined the last day of the program.

As a genetic counselor and assistant director of the Genetic Counseling Program at the University of Minnesota, Lee understands better than most that adoption is itself a health-risk factor. “It’s a real disadvantage right away,” Lee explained during a conference presentation. “With no health records, we have no access to targeted health screenings. We’re relegated to the average risk level, potentially barred from life-saving interventions.”

Family health history enables doctors and other health-care providers to determine whether specific screenings could help mitigate an individual’s risk of various diseases.

Take the case of a patient whose biological parent had breast cancer before the age of 40. That woman would start mammogram screenings at age 30. Without the family history, those scans would typically start at age 40 or 45.

If a patient has a first-degree relative (a parent, sibling, or child) with cardiomyopathy, screening can start at age 12. If a person has no family history, there is no screening.

When Lee started experiencing pain in her hands, a doctor told her to look at her mother’s hands: She’d probably see the same arthritis.

Increasingly, many adoptees have sought to fill in the blanks of their family medical history through direct-to-consumer genetic testing: products such as 23andMe and AncestryDNA. These tests have helped many adoptees, and others who don’t grow up with their biological parents, to connect with relatives from their birth families.

The test may also identify common genetic markers associated with certain health conditions. But users should exercise caution in using the health information these tests provide, Lee said. While she doesn’t discourage patients from trying the services, it’s imperative that people understand their limitations.

How adoptees can build a personal health history

Dr. Kimara Gustafson, an adult adoptee who works as a pediatrician and assistant professor at the University of Minnesota Medical School, advises her patients and families on that learning process.

“How do you take control of your health? How do you navigate the health system?” Gustafson said. She admits the experience can be especially difficult for adoptees. “It is complicated and confusing,” she added.

Clinical genetic testing can help level the playing field, Lee said. The process enables adoptees to build a personal health history in lieu of a family health history.

Like many adoptees, Lee was curious about her own origin family and biological health history. But on a trip to Korea in 2004, she ran into barriers: Her adoption agency refused to provide a copy of her file, telling her they thought it would be upsetting. Anecdotal evidence, Lee said, suggests that agencies sometimes tell adoptees that their files were lost in a flood or a fire, possibly to cover up a history of baby trafficking.

Eventually, when Lee brought her male partner to the adoption agency, she got her file. Back home, she also took an early version of a direct-to-consumer genetic test. She’s since soured on these tests because of privacy issues: “The terms and conditions and privacy policies are thousands of words long, written at a high level, and can sometimes contain information about how law enforcement may use customer data,” she said. Some companies may use redacted consumer information, in aggregate, for pharmaceutical research —and consumers often don’t realize that they’ve opted in.)

Lee never found any close relatives. For those in similar situations, however, she stresses it is possible to begin building a health history.

To start, Lee suggests, share your goals with your doctor. Do all the routine screenings — say, colonoscopies, mammograms, and blood work. Ask for risk calculators and consider genetic testing. If you do take a direct-to-consumer test, “Take it for fun and not 100% accuracy,” she said.

And consider following up with a genetic counselor. While the insights from consumer-level testing will be limited, “This might be the only genetic info that adoptees might ever have,” she said. “Providers should take it seriously. It’s a first step towards a wonderful conversation.”

What can adoptees learn from current genetic testing?

“Genetic testing, whether clinical or direct-to-consumer, can’t give us all the answers. It’s a small piece of the pie,” Lee said. A person’s living environment, and the interaction between genetics and that environment, play a large role in individual health. That dynamic is not captured by genetic testing, she said.

A few years ago, a familiar direct-to-consumer test offered users the option to look for several genes linked to breast cancer. But that consumer test was looking at only three genetic variants. Now, that count is up to 50.

However that number is still quite low compared to clinical genetic testing, which typically looks at hundreds or thousands of variants.

In other words, direct-to-consumer test-takers may easily get the false idea that they are free of indicators linked to cancer.

Worse, Lee said, some “people can see the results and think they’re going to get cancer tomorrow,” — another false idea.

Genetic testing through a hospital or clinic is much more sensitive. It uses a more accurate testing platform, and it requires that labs use validated methodology to test every sample, Lee said. (She notes, however, that costs can be high, and not all insurance plans cover genetic testing.)

When paired with a visit to a genetic counselor, she said, clinical genetic testing is often a positive experience. For people who know they have a family history of a condition, they can see a genetic counselor in various specialties, including prenatal, cancer, and cardiovascular care, she said, and discuss whether to test.

“One of the benefits of genetic counseling is we don’t force or encourage anyone to do it,” she said. “We’re very different than most types of doctors.”

Genetic testing seems likely to grow in popularity, insight

Doctors can face distinct challenges treating patients who are adoptees or children of adoptees, said Dr. Judith Eckerle, director of the Adoption Medicine Clinic at the University of Minnesota, and an international adoptee herself. At the International Conference on Adoption Research , Eckerle discussed a recent case from her practice.

She’d seen a patient with pits: little holes next to the ears, which are sometimes associated with kidney disease. Yet without an established family history of kidney problems, the protocol wouldn’t normally call for a genetic test.

“When we don’t know family history, then sometimes we either miss things that otherwise we would test for,” Eckerle said. “And when we don’t know family history, sometimes we do extra unnecessary testing like renal ultrasounds that otherwise we would not have to do when we do have family history that is known.”

“In the case of adoption, we have no idea,” Eckerle said. “It makes it more complicated for professionals and for the families and patients.”

Eckerle anticipates genetic testing will continue its rapid growth in prevalence. First, advances in fertility treatments are increasing the number of patients who may not have family medical histories for one or both parents. Some of these individuals will want the health insights that come from genetic testing. Second, new developments in testing will allow researchers to  screen for more genes that may be linked to medical disorders.

During the recent conference in Minneapolis, an adoptee in the audience asked about new laws in some states, such as New York, that require insurance to pay for genetic testing.

“Without having the support of a medical professional, it could be very devasting and confusing and overwhelming and harmful,” Lee said. “Just the test itself wouldn’t be good practice.”

As for those annoying reminders that you don’t have a family health history?

“Remind providers to read your chart,” Lee said. “It says you’re adopted.”

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