PHILADELPHIA — Gina Daniel took a MyHeritage DNA test in 2018 hoping to find out how much German ancestry she had. Turns out, she had none.
Instead, the test reported another user who shared 50 percent of her DNA — her actual biological father.
“This is an unexpected trauma on a recreational test,” that people often take for fun, said Daniel, 52.
The Camp Hill, Pa., resident spent days trying to mentally process what she had just learned. She was surprised by how much she was struggling with grief, loss, and anger.
“It completely changed everything for me,” she said.
Advances in genomic technology have allowed DNA testing to break free of academic and forensic labs and enter the home. As costs have dropped from triple-digits to $99 over the past five years, direct-to-consumer DNA tests have risen in popularity, becoming common holiday gifts and impulse purchases. One in five Americans has spit in a tube and learned that their ancestors hailed from Greece, they have a second cousin in Texas, or that they have high risk for breast cancer.
But DNA tests can also dig up closely guarded family secrets, such as an affair or an artificial insemination. And sudden discovery of a health condition can require new medical care — or the realization that there may not be a cure.
Receiving unexpected DNA test results can lead to a mental health crisis for many people, yet resources to help process these unique changes are scarce.
Daniel, a licensed clinical social worker, was working toward her Ph.D. when she received the shocking news.
“I threw out what I was (researching) and I focused on this, because I couldn’t find anything about it,” she said.
Testing the limits
Taking a direct-to-consumer DNA test can be deceptively easy. For many services, including AncestryDNA and 23andMe, customers spit in a tube and mail it in. Swirling around in the saliva are cells that contain microscopic strands of DNA. To determine a user’s ancestry, a fraction of this genetic material is sequenced to look for patterns that match DNA sequences in a database of people from different regions of the world.
That’s not all a DNA test can offer. Every person inherits half their DNA from one parent and half from the other. By measuring how similar the sequences in your DNA are to other users in the testing services’ databases, they can also identify potential relatives. If someone else shares 50 percent of the genetic markers tested, they’re probably a parent or even a sibling. Twenty-five percent suggests extended family, such as a grandparent, aunt or uncle, or niece or nephew.
Other tests can also look for mutations in genes that are commonly seen in people with certain genetic diseases — for an extra fee. For example, it might identify mutations in the BRCA1 gene that increase risk of breast cancer.
But these tests aren’t perfect. DNA tests are only as good as their databases, and while these have ballooned in size in recent years, they still have limits. Ancestry results can change between subsequent tests or different services, and typically pinpoint the origins of people of European descent with more precision. Each service’s database can also limit the relatives that you find: AncestryDNA has around 18 million customers to search, while 23andMe has 12 million.
Similarly, consumer DNA tests that measure health risks offer much less precision than clinical tests administered by medical professionals because they test for a smaller set of mutations that aren’t relevant to people of all ethnicities. These are often skewed toward people of European descent because they are the participants in most medical research studies.
‘An unexpected trauma’
One to two months after submitting a DNA sample, customers receive their results. For some, this can feel like an earth-shattering moment.
Kara Deyerin could not look in a mirror for weeks after receiving her results.
All her life, she was proud of having a Black father and a white mother. She saw that heritage in her own curly hair and olive skin. But the test results now told a different story. She had no African ancestry, which didn’t just mean that her racial identity was shattered: it also meant that the person she had thought of as her father must not be her biological father. The person in the mirror was now a stranger to her.
“A discovery like this leads to an identity crisis,” said Deyerin, 47, who lives near Seattle. “(They) have to go back and re-look at (their) whole life and experiences, redefine them, re-understand them, and reshape them.”
There are a handful of Facebook groups that serve as support systems for people navigating these discoveries, where people commiserate as they wrestle with shocking new information and solicit advice on tracking down biological family members. These revelations are examples of misattributed parentage experience or “MPE,” which includes assisted conception, adoption, affairs, and one-night stands.
As part of Daniel’s new Ph.D. research, she joined these groups to observe the kinds of conversations taking place there, and she soon became concerned for the mental health of people posting in the groups.
“Many people were sounding so unhealthy, the extremes in emotion,” she said. “I was really distressed about what they were saying.”
From her interviews of more than 50 people with an MPE, she noticed a repeated pattern of shock, a clinical term for the emotional response to trauma. Grief was another common experience, and she specifically noticed a type called “disenfranchised grief” where society minimizes or doesn’t acknowledge the validity of the emotional response.
Daniel herself felt a sense of loss as she thought about the decades she wasn’t able to spend with her biological father. Some people experience rejection when they reach out to their biological family or even from the family that raised them, which can compound this distress.
“When it stirs up conflict, when it stirs up anger, or there has been a mythology that’s exposed in the family, there can be emotional consequences for that,” said Kenneth Covelman, an adjunct associate professor in Thomas Jefferson University’s Couple and Family Therapy Program and senior clinician at the Council for Relationships. “Going to a therapist at that point would make sense if you can’t resolve it internally.”
Deyerin, who runs a nonprofit called Right to Know, said surveys have shown that people who are processing an MPE often seek out mental health care.
But not all therapists are equipped with the expertise or tools to respond to these complicated emotions. “A lot of times when we go see a mental health professional, the professional goes, ‘Oh my gosh, wow,’ ” Deyerin said. “Honestly ‘wow’ is not what you want as a response.”
Deyerin is developing a certification program to train mental health professionals in issues surrounding MPEs, including identity, loss and grief, and ethical and psychological considerations.
Deyerin started compiling a directory of mental health professionals nationwide with either personal or professional experience with MPEs called the MPE Counseling Collective. Daniel is part of the MPE Collective. She runs a private practice near Harrisburg where she has worked with clients navigating MPEs who sought out her services after seeing her listed in the directory.
B.K. Jackson, who discovered her own MPE through an at-home DNA test, also sees a need for easier access to mental health resources.
In 2019, she founded Severance Magazine, an online publication that features interviews with psychologists, grief experts, and genetic counselors. She also writes about meditation and other forms of self-care, in hopes of reaching people like herself. In the first six months of 2021, the site had over 18,000 new visitors.
Daniel has a blog called the MPE Guide that includes resources for therapists to learn how to approach MPE-related issues. She thinks MPE-focused training could be useful for medical professionals and genetics counselors too because MPEs have implications for physical health. For example, when Deyerin was pregnant decades prior to her DNA test, she got prenatal testing for diseases that are more common among Black people, like sickle-cell disease. Now that she knows that she has Ashkenazi Jewish ancestry, there’s a new set of medical concerns for her to consider, such as BRCA1 mutations.
Home DNA tests that measure health risk are no less emotionally fraught than their ancestry counterparts.
Some psychological stressors may be more common among at-home health-risk testers because they don’t have the tools to interpret their results, said Zohra Ali-Khan Catts, director of the Cancer Genetics Program at Christiana Care Health System and co-director of the genetic counseling masters program at Jefferson. For example, at-home tests provide uncertain estimates of genetic disease risk that need to be interpreted in the context of a person’s lifestyle and family history.
“Direct-to-consumer testing does create an increase in accessibility. But it is a little concerning to think that they’re left to their own devices,” said Rachael Brandt, manager of genetics and risk assessment at Main Line Health and co-director of the genetic counseling master’s program at Jefferson.
Ripple effects
Testers also might not have thought about the implications for their family — for example, telling relatives that they might also be at high risk for an incurable disease.
“A piece of the psychology of this is not only getting the result for yourself, but then being the gatekeeper of that information,” said Dana Farengo Clark, senior genetic counselor at the Basser Center for BRCA in the Abramson Cancer Center at the University of Pennsylvania.
Farengo Clark estimates that around eight people come in to the Basser Center each week because they learned their cancer risk from a DNA test taken at home or somewhere else and didn’t feel adequately supported.
Genetic counselors are also trained to look for psychological patterns in how people process information, Covelman said, such as whether they are information seekers — often prone to anxiety — or avoiders, which may impact their willingness to start a new medication or see a specialist.
Covelman, who designed a psychology course for the genetic counseling master’s program at Jefferson, said family therapy training “should be foundational for most (genetic counseling) programs, because you are making an intervention in the family by providing that information,” he said.
“We want to try to make (testing) as positive of an experience for them as we can, where they are really feeling empowered by the information that they want to get for the reason that they can cope with it on the other side of it,” Brandt said. “Once you know it, you can’t go back.”
Farengo Clark emphasized that unexpected medical genetic test results can empower patients, rather than undermining their identities.
“We try to make it less who you are, and more what you do with it,” she said.
Jackson said that, like many people, she eventually realized that a DNA test didn’t signal a change in her identity. “We’ve always been who we are,” she said. “Only our knowledge about who we are is changing.”
