Genetic testing could solve family health mysteries for international adoptees in Minnesota

Every time Heewon Lee goes to a medical appointment, she braces herself for the inevitable question: “What’s your family health history?”

Because she was adopted, 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 she’s an adoptee. 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 her medical chart indicates she’s an adoptee.

But clinical genetic testing can help level the playing field, she said, helping adoptees to build a personal health history in lieu of a family history.

Lee spoke at the International Conference on Adoption Research in mid-July at the University of Minnesota, attended by more than 200 adoptees from 20 countries. As a genetic counselor and assistant director of the Genetic Counseling Program at the U, she understands better than most that adoption is itself a health-risk factor.

“It’s a real disadvantage right away,” Lee said at the conference. “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.”

Born in Korea and raised in a small Minnesota town, Lee is among an estimated 10,000 to 15,000 Korean adoptees in the state. Children’s Home Society of Minnesota and Lutheran Social Services started organizing Korean adoptions programs in the late 1960s, giving Minnesota the highest concentration of Korean adoptees of any state.

Like many adoptees, Lee was curious about her origin family and biological health history. On a trip to Korea in 2004, her adoption agency at first refused to provide a copy of her file, telling her they thought it would be upsetting; she finally got the file when she brought her male partner with her. Anecdotal evidence, Lee said, suggests that agencies sometimes tell adoptees their files were lost in a flood or a fire, possibly to cover up a history of baby trafficking.

To fill in the family medical history blank, many adoptees have increasingly turned to direct-to-consumer genetic testing, using products such as 23andMe and AncestryDNA. Such tests have helped many adoptees connect with relatives from their birth families, and also may identify common genetic markers associated with certain health conditions.

Lee took an early version of a direct-to-consumer genetic test, but she’s since soured on such tests. She doesn’t discourage patients from trying them, she said, but they’re not always completely accurate and they come with privacy issues. Some companies may use information for pharmaceutical research without the consumer’s consent.

“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.

Instead, Lee said that adoptees should share their goals with their doctor, do all the routine screenings — colonoscopies, mammograms and blood work — ask for risk calculators, and consider genetic testing.

Genetic testing through a hospital or clinic is more sensitive than direct-to-consumer tests. It uses a more accurate testing platform, and it requires that labs use validated methodology to test every sample, Lee said. Costs can be high and not all insurance plans cover genetic testing, though some states now require insurance to pay for it.

When paired with a visit to a genetic counselor, Lee 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, 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.”

A few years ago, a familiar direct-to-consumer test offered users the option to look for several genes linked to breast cancer. That consumer test only looked at three genetic variants; now the count is up to 50. But that number is still low compared to clinical genetic testing, which typically looks at hundreds or thousands of variants.

That means that those who take direct-to-consumer tests may get the false idea they’re free of indicators linked to cancer. Worse, Lee said, some people may see their results and wrongly think they’re going to get cancer tomorrow.

Dr. Judith Eckerle, director of the Adoption Medicine Clinic at the U and an international adoptee herself, anticipates genetic testing will continue to grow. Advances in fertility treatments are increasing the number of patients who may not have family medical histories for one or both parents, and some of them will want the health insights that come from genetic testing. And new developments in testing will allow researchers to screen for more genes that may be linked to medical disorders.

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

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

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This story comes to you from Sahan Journal, a nonprofit newsroom dedicated to covering Minnesota’s immigrants and communities of color. Sign up for a free newsletter to receive Sahan’s stories in your inbox.