This Magazine

Progressive politics, ideas & culture

January-February 2019

Gene machine

I spit in a tube and uncovered secrets about my family long held under wraps by the government. My case for consumer DNA kits

Adam Elliott Segal

Hand Holding Test Tube
Illustration by CSA Images

IN THE WINTER OF 2018, like millions of others across the world, I ordered a DNA test. For $99, promised me a look into my family roots, using just my saliva. The kit arrived in Toronto late last winter from Utah, Ancestry’s home base. I took the collection tube out of the package, spit all the way to the black line, then screwed on a blue cap to release a solution. I placed it in a plastic bag, activated my 15-digit code online, and off it went to be analyzed in Dublin.

But this wasn’t simply about tracing my geographical origins. It’s far more than that, a potential lifeline to a past hidden from view. You might say these are the halcyon days for DNA. Business is booming. Ask anyone you know—someone in your own extended family has likely spit in a tube as well. The Guardian recently pegged the global genealogy industry at $13 billion (CAD) by 2022; more than 10 million people through AncestryDNA alone have submitted their genetic signature. But every rose has its thorn, and as our desire to discover where we come from has blossomed, so too have concerns about privacy, marketing, the veracity of the science, and a host of unintended consequences. For one group, however, the risks are worth it.

A largely invisible community, adoptees and birth parents spread across the globe are subject to differing federal and provincial laws surrounding their legal rights. Their fight to find their families has found a new ally in science. For far too long, the secrets of prior generations have been deemed more important than the knowledge of our current one. This community remained in the dark about their origins until science changed the rules. Now, the past is being unearthed like ancient dinosaur fossils, and those secrets are rising up.

In 2017, I helped unveil the story behind my mom’s black market adoption in 1940s Montreal, all thanks to a consumer DNA kit. Forged birth records and closed adoption in Quebec meant thousands of children grew up with little information about their biological roots. The hazards of DNA testing were the least of their concerns; in fact, they were early adopters after searching fruitlessly for decades. This past year, story after story appeared in major news outlets with the same worrisome tone. It made me pause: Should the misgivings of a few unsatisfied customers outweigh the immense impact companies like 23andMe and Ancestry have had on my family, for example?

Without it, we’d still be stumbling in the darkness. Now, we’re close to solving a 70-year mystery, thanks in part to our belief that consumer DNA testing offers far more benefits than drawbacks—not just for us, but for the countless number of people linked to adoption who are still searching.

IN 1946, A JEWISH COUPLE from Edmonton adopted my mom in Montreal. They likely turned a blind eye to the nefarious Montreal underworld, where a sophisticated network of lawyers, doctors, and baby couriers ran a profitable postwar enterprise of selling “Jewish” babies procured from unwed and pregnant Catholic girls who were giving birth in unsanctioned homes throughout the city.

My mom was born in what is now a small bed-and-breakfast across from Mount Royal in Montreal’s Plateau. Her birth mother was likely given a small sum and asked to sign a false, Jewish-sounding name, legally absolving her of the child. Cross-religious adoption in Quebec was illegal at the time, and long waitlists helped foster an illegal marketplace. My grandparents paid $10,000 and registered my mom’s birth at a synagogue; a birth certificate arrived in Alberta months later, but any original biological information was absent. It remained an airtight scam until 1954, when two lawyers, Herman Buller and Louis Glazer, were arrested. Only a baby courier, Rachel Baker, saw limited jail time, and the Duplessis era that followed ushered in another shameful period in Canadian child welfare.

The bad actors involved couldn’t anticipate that, half a century later, those children would come looking for answers. After a decade of dead-ends and a newfound community who suspected they weren’t born Jewish, my mom readily swabbed her cheek in the early aughts with one of the first consumer DNA companies. While the matches were few, her haplogroup was distinctly Acadian.

DNA has proved nearly all of the children adopted by Jewish families during this era are French-Canadian or Acadian. Thanks to technological advances and larger genetic databases, two women I profiled have since found their biological family. One, Marilyn Cohen, whose name has been changed to protect her identity, is now in her early 70s. She spent four decades searching for her birth mother until she finally matched with a niece in 2016 using a consumer DNA package. Last summer she spent a weekend at a lake with two older half-siblings and her own family. “I was surprised how quickly I adapted to it,” Cohen says. She describes “muddled feelings” of an adoption that crossed political, religious, and provincial lines after growing up in Hamilton and Toronto. DNA offered her the only way to the truth. “People of my generation yearned for this for decades,” she says. She may be navigating a world where her brother wears a cross around his neck and speaks little English and she still sprinkles Yiddish-isms into the conversation, but she wouldn’t trade the experience for the world—they spent evenings sticking their tongues out at each other from across the dinner table. The tension and anxiety she carried for years vanished.

Erika Kawalek moved back to her hometown of Montreal from New York with her small family several years ago. Fuelled by curiosity surrounding the mystery of her mother’s black market origins and the desire for accountability, Kawalek and her mom submitted their DNA to several companies upon the suggestion of a “search angel” who recommended avoiding the provincial adoption agency. Kawalek matched with several cousins and thankfully, she says, those newfound (and non-Jewish) biological relatives have been extremely understanding about her blank biological slate.

Piecing together a tangled familial puzzle is no small task, and Kawalek and Cohen are not naïve to the concerns surrounding privacy. “It’s that element of the unknown,” Kawalek says. She worries about her genetic information being “out there,” but suggests it’s no different than worrying about identity theft or having her contact information leaked on the internet. She’s ultimately grateful for the opportunity DNA has given her and is slowly getting closer to discovering the identity of her maternal grandparents.

Most older adoptees, from an era when lies and government policies damaged people’s lives, remain pragmatic about the pitfalls of discovering family secrets or potential life-threatening diseases—unlike the general population, whose expectations cause major anxiety thanks to an unhealthy mix of advertising and media coverage. Writers parachuting into this topic zoom in on subjects with dark family secrets, unbeknownst infidelities and the lies that followed, forgetting about the thousands of adoptees who see DNA in a positive light and continue using it as a life preserver. In a Guardian story published last summer, a woman of mixed heritage who believed she was of Indian descent was disappointed when DNA results indicated no such thing. If she’d known, she said, she never would have taken the test.

It made me think about what kind of privilege exists to believe such a lie, one that black-or grey-market adoptees were never afforded. The same newspaper published another salacious story this past September titled, “Your father’s not your father: when DNA tests reveal more than you bargained for.” “My ancestry test revealed a genetic bombshell” rang out from the New York Post. The Atlantic interviewed a father who divorced his wife and joined a support group after learning via DNA that his daughter was not his. Dozens of headlines like these
papered the media landscape in 2018 alone.

Is there a solution to quell the rash of articles sounding the alarm about this burgeoning science? One suggestion from the Human Fertilization and Embryology Authority (HFEA), a British fertility watchdog agency, is that consumer genetic companies do more diligence in preparing customers for life-changing events rather than promoting sexy ancestral Viking stories or the American who trades his “lederhosen for [a] kilt” after discovering he’s not German but Scottish. The HFEA penned a paper last fall asking Ancestry and 23andMe to caution test-takers about the inherent risks of discovering a predilection to disease or the emergence of new family. Companies such as Grandma’s Genes in Ottawa and My Gene Counsel in the U.S. seek to fill the gap, offering counselling services alongside test results. The overriding sentiment from Cohen was not a desire to learn of her relationship to thousands-year-old ancestors, but the desperate need to know who her mother was. For the dozens of black-market babies I’ve interviewed over the years, submitting a saliva sample or simply making their birth story public wasn’t a philosophical or moral question. It was the only way to get answers.

WHILE ANSWERS MAY prove elusive, questions abound, especially in academic circles. Steven J. Heine, a University of British Columbia psychology professor and author of DNA is not Destiny, believes the future of direct-to-consumer DNA companies is regulation. In his book he takes three separate DNA tests, all with varying results. He details a psychological landscape where our biases negatively dictate the way we view genetic science, and suggests our brains are trying to simplify complex problems about genetics and health with quick-fix answers, much like we do when visiting psychics. “People tend to believe the reason we are the way we are is because we were born that way, that we have this magical force,” he says, “and when we hear science tell us they’re measuring this, we tend to buy into it.” Heine is encouraging people to unwind their expectations that genetic testing answers everything, especially when DNA testing becomes less of a boutique industry and standard medical procedure.

It already has. Here in Canada, a Pharmasave north of Kingston, Ont., began offering medical DNA tests to the public in 2018. The implications are still to be determined. My father, a family physician practising in Vancouver since 1980, says his biggest concern is that insurance companies will hold the medical industry hostage for patients’ DNA when assessing risk.

The justice system is also lauding the critical role DNA is playing in catching high-profile criminals in California and the Netherlands. But not all is rosy. One Canadian is currently suing Ontario’s Centre of Forensic Sciences for “unlawfully keeping” the analysis of his DNA after he was exonerated. A recent New York Times op-ed revealed 74 out of 108 crime laboratories hypothetically incriminated innocent people. Worse, the lab results were first reported four years ago but were not published until now. DNA is being politicized, too, as evidenced by Senator Elizabeth Warren’s five-minute video released mid-October, in which Warren calls a genetics professor at Stanford University to confirm her claim to Native American ancestry—a claim Donald Trump widely challenged. Not only did Warren’s anti-Trump video miss the point—confusing race for ancestry—it’s also a visceral reminder that race politics already intends on including DNA companies.

IT SEEMS FOR EVERY positive there’s a negative—a lifeline for the adoption community is a familial crisis for others; the Dutch catch a criminal while U.S. crime labs put innocents in jail. Perhaps that’s why it’s so complicated to see where we are in the current climate and where the future is headed.

Here in Canada, progress is being made at the legislative level. Last July, the Standing Senate Committee on Social Affairs, Science and Technology chaired by Art Eggleton presented The Shame is Ours: Forced Adoptions of the Babies of Unmarried Mothers in Post-war Canada. It’s a broad, sweeping document detailing the testimony of Canadian mothers forced to relinquish their children to the state. A suggestion from Statistics Canada lists almost 600,000 babies born between 1945 and 1971 and recorded as “illegitimate births.” The report asks for apologies, reparations, and that the federal government work with provinces to “initiate a discussion on the status of provincial legislation governing adoption files, in particular whether parents and adoptees have the rights to access those files.”

Valerie Andrews, executive director of the federal non-profit advocacy group Origins Canada, says the government has until the end of 2019 to respond. Her new book, White Unwed Mother: The Adoption Mandate in Postwar Canada, expands on the committee report, detailing the national mandate to separate unmarried women from their children following World War II. Every province except Nova Scotia has altered provincial adoption law amid changing public opinion and pressure. Andrews calls them “semi-open.” Disclosure vetoes continue to blame mothers, she says, for the institutional failures of government and still prevent truly open access to original birth records. That’s worrisome for anyone still seeking transparency.

If there was ever a time to talk about child welfare and women’s rights in Canada, it’s now. Bill 113, for instance, passed into law in Quebec last June. It promised to peel back red tape for the adoption community; but feedback has been mixed. On the Adoption Quebec Facebook group, questions abound: What is the website address? How do I apply? When will I find out? What if my birth parent is deceased? Do they include identifying information? Sufficed to say, it’s mildly confusing navigating the bureaucratic waters. My mom, for instance, is categorized as an “international” adoptee because she was born in Quebec but adopted into Alberta. Caroline Fortin, president and coordinator of Mouvement Retrouvailles, a non-profit adoption organization based in Lévis, Que., wrote a seven-page letter to the chief adoption officer at the Centre intégré de santé et de services sociaux de la Montérégie Est, urging her to expedite the process.

Andrews says the province’s current bill excludes birth parents from applying—the only province with a “mother-may-I” approach. With the October 2018 election win by the Coalition Avenir Quebec, the first right-of-centre party to win Quebec’s provincial election since 1966, progressive politics may be a thing of past. Fortin is hoping to meet with the new minister of justice to discuss modifying the law. But whether Quebec follows in the federal government’s wake and continues taking steps to de-stigmatize the issue and proactively allow records to become accessible for all remains to be seen.

We have public safeguards that prevent information from being mismanaged or sold, but at some level, we must decide whether we distrust science, the justice system, government, and fear of the unknown, or if we’re willing to take the leap of faith that our institutions are working for and not against public interest. For women like Kawalek and Cohen, the risk is worth it when the past has been buried for so long.

Heine suggests that scientists believe one billion people will have their genome sequenced by 2025. Count me as one of them. Last July, I visited my parents in Vancouver armed with my test results. My father’s Ashkenazi Jewish side contrasted sharply with the Acadian names that belong to my mother’s unknown biological family. Recent upgrades to Ancestry’s website now include samples from 380 regions (up from 22 in 2012) and a five-fold increase in reference samples from people who have “long-standing roots” in specific parts of the world. (Customers with African or Asian ancestry had reported conflicting results, suggesting a possible racial bias.) My updated results arrived in September. I’m six percent Spanish instead of 12 percent Iberian and my helix is now distinguishable between Ireland and Britain, where I present 14 percent. What used to be called Europe West (23 percent) is now France (28 percent). That Ashkenazi Jewish in me? I’m up from 44 percent to 50 percent.

It is, however, a bit confusing. My mom, once a hodgepodge of European ancestry, is now 100 percent from France. Shouldn’t that mean I’m 50 percent French rather than 28 percent, I asked a customer service representative at Ancestry. She explained DNA “washes out” generationally, which made me think of my ancestors drying their laundry, not where I come from. The new updates have actually created more questions than answers as we piece together a family tree and contact potential family members. But we’re making progress. Paying an extra $60 annually means publicly accessible family trees, census records, and shipping documents, the latter invaluable when tracing Canada’s immigration history—and my own. I found the ship that brought my father’s Russian-born great-grandmother and her children to Canada at the turn of the 20th century. A woman living in Alabama contacted me. Did I know the Segals from Winnipeg? she asked. I emailed her a family photo from the 1930s. My father’s long-lost second cousin sent back the exact same one. The irony was not lost—in the search for my maternal family, my father’s surfaced.

Like it or not, your genetic coding is an emotional experience. It’s personal; it’s family; it’s yours and yours alone. If there’s a fear, it’s of the unknown, of something
beyond your control. There is, I believe, a sense that knowing the truth, or even discovering the lies of our ancestors, is important.

a murky landscape fraught with potholes for millions of customers with varying agendas. I’m not unsympathetic to those with fears; but I’ve spoken to too many people whose lives have been changed for the better thanks to a little spit in a tube. Several universal questions still deserve answers, whether those answers come from science or government: Who are we? Where do we come from? For thousands of years, these questions were philosophical and religious in nature, isolated to specific regions of the planet, not bound by provincial law. Now, science has offered another layer to the puzzle.

What does it mean for us? My mom took her first DNA test in the early 2000s. The connections were distant, the geography broad. She recently matched on Ancestry with a new second cousin, Lyne, one of her closest biological relatives. Lyne’s own mother, who is from a small town in New Brunswick called Caraquet, recently agreed to take a DNA test. After watching Les Berceau des Anges, a 2015 miniseries about the black market babies saga, I asked Lyne what she thought about our unorthodox story. “When you watch a TV show, you watch part of history, of a past generation,” Lyne said. “When you realize you know someone who lived it, it’s shocking.”

While her birth mother’s identity remains a mystery, my mom simply says: “I never even thought I could go this far.” The blank slate presented to her often felt finite, a mystery. Now, the future finally seems infinite.

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