Read The Best American Science and Nature Writing 2014 Online
Authors: Deborah Blum
Today's genetic tests can probe many more markers, making them much more accurate. 23andMe uses around half a million markers, on all twenty-three chromosomes, to probe each customer's ancestry. But many other companies continue to use only a small number of markers, and none make their reference databases or methodology transparent to customers. As one group of scholars wrote in a 2009 paper in
Science:
“Genetic ancestry tests fall into an unregulated no-man's land, with little oversight and few industry guidelines to ensure the quality, validity, and interpretation of information sold.”
Even if all the tests were completely accurate, they'd still pose big philosophical questions: How much weight do individuals give to genes when forming ethnic, racial, and religious identities? How much weight should they give to DNA?
Cheryl, when pressed, acknowledges that she is some combination of her innate genetic predisposition, traumatic upbringing, and six decades of life experience. But like many people, she seems to give special weight to her genes. As she posted to a site called Cousin Connect shortly after finding out that Joe wasn't her father: “I want nothing from anyone [except] to know what blood line flows through my veins, my children, and grandchildren's.”
Many people find religious and cultural identities in their DNA. Take Andrea, a thirty-five-year-old adoptee. When she was less than two years old, her biological parents put her and two older brothers in foster care. The children were soon adopted, but their new parents were alcoholics, and they had messy and difficult childhoods.
At sixteen Andrea left home and, a few years later, began searching for her birth parents. She found her father's profile on a dating web site and called him. “That was a really hard phone call, because he was not interested in me,” she says. He also told her about her biological mother, and some searching revealed that she had died. “It was very upsetting.”
But Andrea was profoundly uplifted by the results of her DNA test, which she bought from 23andMe about a year ago. The test indicated that she's approximately one-quarter Ashkenazi Jewish. “That was like, the shock of all shocks,” she says. Though she is a practicing Christian, she has felt strong ties to Jewish culture since college, where she was a religious studies major. “I was very, very drawn to Jewish studies classes, I took biblical Hebrew, and always wanted to go to Israel,” she says.
Finding out that she had genetic roots to Judaism was bittersweet, she says, because she would have liked to have grown up in the Jewish culture. She's making up for it now by reading all she can about Jewish history. “I will sit at home and watch documentaries on YouTube about Jerusalem,” she says, laughing. “I love it. And it's so fascinating to meâthe personal connection I had [with Judaism] even before I knew, and the one that continues now in my life.”
That kind of emotional connection, the “Aha!” moment, is what Cheryl has been searching for all her life. She's always wondered why she and her children don't look like her sisters, Vivian, or Joe. Her son, Travis Whittle, has curly hair and a gregarious personality that Cheryl says resemble no one else in the family.
She wonders about her own traits and predispositions too. She has had several bouts of depression over the years and is almost always anxious. “I know that my mother had some depression. But I wonder if my father might have had some problems too.”
It wasn't enough to know that Joe wasn't her father. To feel whole, she had to know who her real father was. “You know how in the Bible it says so-and-so begot so-and-so begot so-and-so?” Cheryl says. “If you leave out a begot, there's something missing. It doesn't quite fit.”
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Cheryl's fervent hunt for the mystery man responsible for half of her genetic identity has consumed much of her time over the past three years.
She didn't have much luck browsing the Relative Finder section of the 23andMe web site, which compared her DNA to that of the other people in the company's database who had opted to share with the community. Her only genetic matches were estimated fourth, fifth, and sixth cousinsânowhere near close enough to trace back to her father.
In June 2010, Cheryl bought Family Tree DNA's genetic test, “to fish in more ponds,” as she puts it. The $293 cheek-swab test gave her access to all of the people in Family Tree DNA's database, any one of which could have been a match. Unfortunately, though, she caught no fish.
Cheryl's search went cold for nearly two years before picking up in April 2012, when CeCe Moore put her in touch with Diane Harman-Hoog of Redmond, Washington. Diane has spent her retirement yearsâ“seventeen hours a day, seven days a week,” she saysâas a genealogy “search angel,” helping hundreds of people, mostly adoptees, figure out their family mysteries at no charge. Diane had just started to add genetic results into her search methods and was eager to look into Cheryl's case.
By pooling information from various sites, Diane created a spreadsheet showing more than five hundred people who shared some of Cheryl's DNA. Each line of the spreadsheet gave the person's surname and the precise chromosome location where their DNA matched Cheryl's. But, big as it was, Diane's spreadsheet didn't identify any useful leads. “Diane wrote me and said, âCheryl, we do not have enough. Your matches aren't close enough yet,'” Cheryl recalls.
That was in August 2012. Just a few months earlier,
Ancestry.com
âthe largest genealogy company in the worldâbegan selling its first autosomal DNA test. Cheryl bought one in September for $99, to try her luck in yet another pond. Eight weeks later she had her matches: nobody was closer than a fourth cousin.
During this lull in her search, Cheryl says, she had a profound spiritual experience. “One morning I got out of bedâand this sounds crazy probably, but, you know, I believe in God. I was just feeling real down about it. But then something inside of me said, âYou will find your father.' And so I was clinging to that. I knew that it's just a matter of not losing hope.”
One February morning this year, Cheryl received a note via
Ancestry.com
's internal message service from a woman named Jeannette Morrison, a genealogy hobbyist who had taken the test to expand her tree. She had identified Cheryl as a possible second cousin. Cheryl wrote back immediately and updated Diane about the new lead. A second-cousin match, Cheryl knew, could be a very big deal.
While
Ancestry.com
's test will estimate the relatedness of two people, it doesn't allow customers to compare their genetic data chromosome by chromosome. And Cheryl couldn't tell from Jeannette's family tree whether they were related through Cheryl's mother or father. So Cheryl bought another 23andMe kit and sent it to Jeannette's house in Ohio.
When Jeannette's test results came back, in April, Cheryl discovered that Jeannette did not share any DNA with Sandi. In other words, Jeannette was exactly what Cheryl had been praying for: a solid lead to her biological father.
23andMe showed that Jeannette and Cheryl shared seventeen segments of their DNAâincluding, crucially, two bits of the X chromosome. Through logical inferences and painstaking searchesâcomparing trees, geographical locations, birth and death datesâDiane found one of Jeannette's relatives, Joseph Parker, who was about the right age and had lived in the right place to be Cheryl's biological father.
Joseph had died in 1987, leaving behind a son, Joseph Jr., and one daughter, Effie Jane, who lived in Richmond. According to Diane's analysis, Effie Jane could be either Cheryl's first cousin once removed or her half-sister.
There was only one way to find out.
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Genetic genealogy is part of the much broader cultural trend of uploading personal data to the cloud. We willingly flaunt photos, videos, and demographic information on social mediaâFacebook, Twitter, Flickr,
match.com
âand give our credit card and social security numbers to banking and retail sites. Even seemingly private dataâe-mails, cell phone records, Internet browsing patternsâis actually, we're learning, under government surveillance.
What's fascinating about genetic genealogy is that it brings together two very different perspectives on privacy. DNA is arguably as personal as it gets. It's an individual's unique code of life. That's why, among doctors and health care workers, genetic data is subject to strict privacy regulations.
The traditional genealogy community, on the other hand, is all about sharingâsharing family trees, sharing documents, sharing stories. “The only way you can connect with people is with some loss of privacy,” says Yaniv Erlich, a geneticist at the Whitehead Institute for Biomedical Research in Cambridge, Massachusetts.
Erlich is a world expert on genetic privacy. Earlier this year his team caused a stir among medical researchers with a study in
Science
showing that supposedly anonymous participants in genetic research studies can be identified using simple software and an Internet hookup.
But Erlich is also an avid genealogist. In the past few years he has bought DNA tests from 23andMe and Family Tree DNA and has chosen to upload his genetic data to their databases. In doing so, he discovered that he carries the Cohen profile on his Y chromosome, confirming what had been passed down through his family's oral tradition. He also found a fifth cousin, whom he later met at a family reunion in Poland. That cousin grew up as a Christian, but because of his genetic discoveries is converting to Judaism. “It touches people, what they find in their DNA,” Erlich says. “I think it's wonderful.”
The core privacy tension in genetic genealogy, Erlich notes, is that your DNA is not yours alone. “By putting your data out there,” Erlich says, “you're not only sacrificing your own privacy but also the privacy of people who are connected to you, because you share DNA.”
In June the
Times
, a British newspaper, ran a front-page story with the headline “Revealed: The Indian Ancestry of William.” Two distant cousins of Prince William had their DNA tested with a company called BritainsDNA and discovered that they carried a rare set of markers that had previously been found in only fourteen people: thirteen Indian and one Nepalese. Because the DNA in question passes only from mother to child, and the cousins shared a great-great-great-great-grandmother with William's mother, Diana, they could infer that the heir to the throne also has these Indian roots.
That particular bit of trivia is only important if you're in the business of selling newspapers, as commentator Alex Hern pointed out in the
New Statesman.
But what if the genetic intel hadn't been so silly? As Hern put it, “There is a wider issue at stake here, which is that the story reveals information about the genetic makeup of someone who has not consented to any DNA tests.”
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The loose definition of genetic privacy, of course, is what allows people like Cheryl to solve their life mysteries. Cheryl's cousin Jeannette, by agreeing to a DNA test, opened up the possibility of Cheryl identifying her real father and his descendantsâregardless of whether any of them wanted segments of their DNA posted on a public database.
This riskâthat relatives may be harmed in some way by the sharing of their DNAâhas led some to argue that the decision to share is not an individual's to make. In 2010 Henry Louis Gates Jr. asked twelve celebrities to get DNA tests for his television show about genealogy,
Faces of America.
The novelist Louise Erdrich was the only one to refuse. Erdrich's maternal grandfather was a chief of the Turtle Mountain Band of Chippewa Indians, a Native American tribe in North Dakota, and Erdrich is also an enrolled member. As Erdrich explained to Gates regarding the DNA test: “It wouldn't do me any harm, but when I asked my extended family about thisâand I did go to everyoneâI was told, âIt's not yours to give, Louise.'”
Legally, however, genetic testing is an individual decision. And unlike Erdrich, many people only consider privacy repercussions when they're suddenly facing them.
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Mike Taffe hadn't given much thought to violating his extended family's privacy when he sent a tube of his spit to 23andMe in early 2012. Taffe is a neuroscientist at the Scripps Research Institute in La Jolla, California, and he was interested in the medical risk markers he might be carrying. As an adoptee, he would also become interested in the company's Relative Finder service.
For Taffe's first few months on the service, the closest matches were not close: third or fourth cousins. Then a first cousin popped up: an African American man named Chris. Taffe wrote to Chris using 23andMe's messaging service, explaining that he was looking for his father, who was, according to records from the adoption agency, a Puerto Rican man born in the 1940s. Chris said that didn't ring any bells, and their correspondence ended soon after.
Taffe let it go. Then, a year later, the company dropped its prices to $99 per kit, spurring him to send in spit samples of his three children.
Back on the site, he was reminded of his message to Chris and started snooping around online. He found Chris's Facebook page, which was open to public viewing, and clicked through his photos. From these he spotted Chris's mother. (They had to be related through her, Taffe reasoned, because 23andMe had shown that they didn't share Y-chromosome DNA.) Then, on the Facebook page of his presumed aunt, Taffe found some of her high school photos and her name.
After some more judicious Googling, he found an obituary for his aunt's brother. No other siblings were mentioned. This man, Taffe thought, could very well be his biological father. The obit named the man's three surviving children, and one of them, Cliff, had a Facebook page.
Taffe was immediately struck by Cliff's photo: they shared a nose. “It was like, whoa, dude,” Taffe says. Looking through his presumed half-brother's photos, Taffe saw a few that Cliff had posted of his father around the time of his death. The nose was the same.