She Got a Hysterectomy Because of Family History. Then She Found Out She Was Adopted.
Consumer genetic testing is resulting in some truly traumatic medical surprises
In her early fifties, Linda Minten began experiencing symptoms of what her doctor believed might be ovarian cancer. She was bloated, bleeding, and in pain. An ultrasound was inconclusive, but testing found an elevated level of a tumor biomarker. The fact that Linda had recently learned she was likely about half Ashkenazi Jewish through her mother worried her because it increased her likelihood of having a BRCA1 or BRCA2 variant, which would put her at higher risk of that kind of cancer.
Wondering if her father might also have Ashkenazi Jewish ancestry, further increasing her risk of these variants, Linda decided to find out more about her ancestral heritage. Like over 30 million Americans, she turned to consumer DNA testing for more information. She sent her spit into the largest of these databases, AncestryDNA. She also ordered a clinical-grade test from a company called Color to look for many mutations that increase cancer risk.
Linda’s father had passed away decades earlier, but Linda told her mother what was going on and consulted her on the family’s health history, which included two maternal relatives with cancer and the fact that Linda’s mom had had a hysterectomy. Linda brought all this information back to her doctor, who considered all the risk factors and recommended she have an emergency radical hysterectomy. “We couldn’t wait for it to pan out,” Linda told me.
The Color test came back the day before Linda’s scheduled surgery. It didn’t find evidence for the genetic mutations Linda was worried about, but her doctor felt the procedure was still warranted. So she had the surgery, and afterward, her doctor told her there was no evidence of cancer in the organs that had been removed. Linda was relieved and felt they’d made the right decision based on the information they had.
But a week and a half after the surgery, as she was recovering, Linda’s AncestryDNA results came back, and that’s when things took a turn.
Like so many others I spoke with while researching my book The Lost Family: How DNA Testing Is Upending Who We Are, Linda’s results offered a life-altering surprise. Her relative matches listed a man she didn’t know as her father, as well as a half-sister and cousins she’d never heard of.
Understanding didn’t come right away. Linda had to piece the clues together. She had to call her mom, who said she didn’t know why the test had predicted some stranger was her father. She had to call Ancestry and speak with a kindly customer service representative, who assured Linda the results were almost certainly accurate and that she was far from the first person to call with unexpected results. She had to log back onto Ancestry.com and look at her ethnicity, which suggested she had no Jewish ancestry at all. She had to examine the language on her birth certificate until she realized it had been amended and issued a year after her birth. She had to call the county in Arizona where she’d been born and find out that her original birth certificate was sealed. And, she says, she had to call one of her brothers and wring the truth out of him.
If she’d known the truth, she wouldn’t have been so panicked by what she thought was an elevated risk. She might not have needed the surgery at all.
This was how Linda found out she was adopted — a plain fact she says everyone, including neighbors, teachers, and her two older brothers, had known, but which she herself had never been told. Linda was 51 years old.
And she was dumbfounded. Dumbfounded that her mother hadn’t told the truth when asked and hurt that her brothers hadn’t intervened despite their mother’s edict not to. “I just went through a hysterectomy,” she told one of them. If she’d known the truth, she wouldn’t have been so panicked by what she thought was an elevated risk. “I would have had more time. I could have retested.” She might not have needed the surgery at all.
It was strange. Linda had never suspected she was adopted, even though as a lonely child emotionally estranged from her mother, she’d sometimes fantasized that she was. Now, the revelation of her adoption was somehow freeing. When she spoke with her mother again, Linda told her what she knew, and she says her mother told her, “We did the best we could.”
Mary Rubens, a close friend to Linda who is also the ex-wife of one of her older brothers, confirmed the basic timeline of Linda’s story and told me that even she had known Linda was adopted since she’d been a teenager dating Linda’s brother. Mary had long expected Linda’s family to tell her, but she herself did not, feeling it was not her place and feeling bound by a promise she’d made to Linda’s father decades earlier that she never would. Once upon a time, some thought it best that adopted children not be told they were adopted. “I just think that he didn’t ever want her to feel unloved,” Mary told me.
And now what? At once distraught and relieved and eager to understand where she’d come from, Linda set out to find her birth parents.
She started with her birth father, who was already in the AncestryDNA database under his initials. She thought he might have tested his saliva in hopes of finding her. But the first few times they spoke on the phone, the man’s reaction surprised her. “‘I’ll be darned,’” she says he remarked. He said he hadn’t known Linda existed, nor did he remember her mother. Linda told him she was conceived in March 1965 — did that ring a bell? Nope. Her mom might have been a redhead, like Linda — did that help? It did not. In their second conversation, he told Linda that these phone calls were getting him in trouble with his wife, and she apologized, feeling again like the child who was unwanted and out of place.
Still, she kept trying for connection. “Look, it’s been a month,” she told her biological father. “If you’re not going to tell your kids, I will.” One of her father’s daughters was already matching her as a close relative in the database, and on Facebook she’d become friends with several paternal relatives. She figured it was only a matter of time before her father’s three daughters discovered her existence. “I knew what being the last person to find out a secret felt like,” she said. So she sent them a note.
All I could think when I read the Facebook Messenger exchange between Linda and her half-sisters was what a jarring and thoroughly modern way this was to meet one’s genetic family. Linda’s tone is effusive, vulnerable, alternating between being eager to know her siblings and allowing they might want nothing to do with her. She explains that she was conceived before their parents were married, but she’s aware that her existence may nonetheless cause distress to them and their mother. Their replies are terse, stunned. Later, Linda would say she was so excited to have half-sisters that she didn’t fully appreciate how her story posed a fundamental threat to their story.
Linda also set out to figure out her biological mother’s identity, working with family trees she created based on maternal cousins among her relative matches and homing in on a woman who was a classmate of her biological father’s. When she figured out the identity of the woman she believes was her biological mother, she learned the woman had passed away six months earlier, leaving Linda to piece together a biography from clues: an obituary, which she read countless times, a photograph on Classmates.com, and conversations with maternal relatives. “You don’t get to know the person, so you hold on to these little tiny scraps,” she told me. The woman also left behind two grieving daughters who said they’d never known of Linda’s existence. The news Linda bore appears to have contributed to poisoning her overtures. She forwarded me an email sent by the husband of the deceased woman, calling Linda “deplorable.”
Linda kept pursuing various members of both families, certain that if she could just reach the right person, she would be heard and, perhaps, welcomed, but for the most part, she’s been shut out. She says she’s heard that some in her father’s family believe she is interested in money, an accusation that deeply wounded her. She forwarded me a “discontinuance of contact” letter sent by an attorney for her biological father and his wife, telling her that his clients believed her “assertions are based on unproven guesses and conjecture” and asking her to “slow down and research this in a more measured, analytical manner.”
Negotiations over having Linda and her father submit to formal paternity testing broke down amid questions of who would pay for what and mistrust on both sides.
“When you’re 51 years old and this hits you, you feel like you’re six,” Linda told me one day, her voice breaking. “You just feel so vulnerable, so raw and vulnerable.” She had a neediness I’d come to recognize from other consumers of genetic testing who felt they’d been denied their identities; entire conversations were conducted in a minor key. Linda told me she understood why her mother had given her up for adoption — “she was young, scared, and the love of her life just married someone else.” But being kept hidden hurt so bad.
Perhaps the way she’d come into the world had once been taboo; perhaps her mother’s pregnancy had been a problem to be taken care of. But she herself did not want to be a taboo or a problem. She did not want to have to apologize for her own existence.
