The Best American Science and Nature Writing 2014 (17 page)

This summer Taffe took the plunge and sent a Facebook message to Cliff. It was vague, saying only that he was interested in ancestry and that he thought they might be related. Cliff never responded. If he ever does, Taffe isn't sure how much more he would disclose. “People have a right to privacy, even from their relatives,” Taffe says.

He has started a discussion about these issues on a 23andMe forum targeted at adoptees. “Obviously a lot of the adoptees have decided that their right to know trumps any other possible consideration. I do not, at present, agree with this.”

The 23andMe community forums, open to any 23andMe customer, are filled with gripping stories of people who are looking for their parents. They're usually adoptees who bought the 23andMe test for this purpose. But there are also stories of people who inadvertently discovered that their parents weren't who they said they were.

One such story comes from Terry, a college student whose world was rocked by the matches she found on 23andMe. At the top of the list was a man whom she calls John Doe, who shares 28 percent of his DNA with her. 23andMe suggested that he was her grandfather, but that didn't make sense, given what she knew about her family.

Terry sent John Doe a message through 23andMe and learned that he is twenty-three years old, ruling out the grandfather theory. After hunting around online, she discovered that it's not only her grandparents who share one-quarter of her DNA; John Doe could also be her uncle, half-brother, or double first cousin. Since she didn't share any X-chromosome pieces with John Doe, she figured he was a half-brother through her father.

Terry called her mother and asked her what she made of John Doe. As Terry explained on the forum, after initially seeming baffled, her mother tried to deter her from pursuing John Doe. Over the next few days, dozens of other community members chimed in with advice and sympathy. One member asked Terry if she had considered the possibility that her parents had used a sperm donor. She had. Her parents were married for nine years before her birth, she wrote, so it was possible they had had fertility issues. After learning about John Doe, Terry had asked her mother directly if they had used a sperm donor—a suggestion her mother described as “insulting.” Terry believed her mother at first. But doubts crept in, partly because Terry's ancestry composition did not match her father's ethnicity.

John Doe, for his part, didn't seem to understand genetics. He told Terry he thought they were cousins, and that it was just a “coincidence” that they shared so much DNA. Terry gently reminded him that first cousins share 12.5 percent of their DNA on average—not 28 percent.

Eventually, Terry's parents confessed: they had indeed used a sperm donor. Despite the new information, John Doe was in denial, continuing to say that he was definitely his father's son.

Terry's story illustrates the web of privacy concerns that these tests can create. Her results challenged the privacy of her parents, her half-brother, and her half-brother's parents. Terry's results may ultimately affect the privacy of her biological father as well. She has sent messages to several people the database identified as her first cousins, thinking that they might know an uncle who donated sperm.

Terry would have preferred that her parents had told her the truth, but she understands why they didn't. In fact, she's now keeping the same secret from a younger sibling who was conceived with a different sperm donor. As someone on the forum pointed out, Terry will have to keep her sibling away from 23andMe.

 

23andMe spells out several privacy issues in its Terms of Service agreement. In the fifth of twenty-eight sections, titled “Risks and Considerations Regarding 23andMe Services,” the company states several stark facts in bold type, including:

• Once you obtain your Genetic Information, the knowledge is irrevocable.
  
• You may learn information about yourself that you do not anticipate.
  
• Genetic Information you share with others could be used against your interests.
  

In a different document, called the Privacy Statement, the company highlights possible consequences of sharing genetic information. “Personal Information, once released or shared, can be difficult to contain,” it reads. “It is incumbent upon customers to share Personal Information only with people they know and trust.”

Family Tree DNA and
Ancestry.com
have similar agreements, though they're less explicit about these intangible risks. It's impossible to know, of course, how many customers ever read them. “We'd like to believe that everyone who's accepted the terms has actually read them, but in practice we know that that's not always the case,” says Catherine Afarian, a spokesperson for 23andMe.

As the company's database grows, there are bound to be more people who find out family secrets. “It's a reflection of what actually happens in our society,” Afarian says. Privacy is a top concern for the company, she adds, which is why the consent forms and privacy documents are written in clear and explicit language. “We try to be really up front.” For now, these issues haven't caused any legal problems or customer upsets, she says, and if they do, the company's privacy policy “could certainly evolve over time.”

Nor is privacy the only area where DNA testing's ethics are considered a work in progress. In November, 23andMe came under fire from the U.S. Food and Drug Administration for the part of its service that offers medical risk profiles. Customer results, delivered online with brief explanations of genetic indicators, such as Sandi's discovery that she was at high risk of cancer, therefore fall under the FDA's regulatory regime.

The agency accused the company of failing to cooperate fully over a period of four years and of failing to communicate at all for more than six months. And although 23andMe rebuffed the claims, the company has now stopped marketing its services and faces a class-action lawsuit from disgruntled customers.

Cheryl has bought sixteen kits from 23andMe, two for her (after her first one, she bought an updated version) and fourteen on behalf of her friends and family. For each of them, she asked their permission and explained what she wanted to use the data for. But nobody ever read the forms.

Still, not everybody is interested in playing the genetic genealogy game. When Cheryl asked her daughter Wendy's husband, Dennis Plear, if he'd like to test, he flatly refused and also forbade Wendy from having their children tested. Dennis, a disabled navy veteran who is half African American and half German, is wary of such personal information winding up in the hands of the government. “When you start giving out samples of your DNA, you're opening the door for other people to be in your business,” he says.

When told that these companies purport to be keeping the information secure and out of reach of third parties, Dennis wasn't impressed. “If you have it on file, on the Internet, the government has access to it one way or another.”

But for every customer deterred by privacy concerns, there seem to be many more who don't care. Genetic genealogy databases are growing every day, and that pace will quicken as the costs of genetic sequencing drop.

It's plausible that in the not too distant future, we'll all be identifiable in genetic databases, whether through our personal contribution or that of our relatives. Some ethicists have called for federal legislation to restrict these kinds of collections. But many scientists, including Erlich, are against that idea, pointing out that genetic databases can be used for good—not only for genealogy, but for medical discoveries. “We cannot change the course of technology,” Erlich says.

Instead, he says, regulation should focus on preventing harm to individuals. For example, the Genetic Information Nondiscrimination Act (GINA), passed in the United States in 2008, says that health insurers and employers cannot use an individual's genetic information to deny medical coverage or to make employment decisions. “GINA was a good step forward,” Erlich says. “It's not about having the information—it's about not abusing it.”

 

From her training as a nurse, Cheryl is aware of the need to respect other people's privacy. So in May of this year, when she first reached out to Effie Jane, she was wary of divulging too much, saying vaguely that she was interested in the Parker family line.

About a week later Effie Jane wrote her back saying she would be happy to talk to her. Over the next couple of weeks, Cheryl and Effie Jane shared many e-mails and phone calls and discovered that they had a lot in common.

“I never felt like I was a part of my family,” Effie Jane says. Her ruddy complexion and crystal blue eyes look like Cheryl's, but that's the extent of their physical resemblance. Their childhoods, though, were similarly traumatic. Effie Jane started having seizures at six months old, and at fourteen her mother died. Her father, Joseph Parker, like Cheryl's adoptive father, Joe, was cold and indifferent, and “may have had a little mental imbalance,” Effie Jane says. After her mother died, his personality changed; for example, he instructed her to start calling him “Mr. Parker” rather than “Daddy.”

Effie Jane has felt rejected her whole life, but found acceptance in Cheryl. “I had always prayed for a sister,” she says. After meeting for the first time at Panera, the women kept talking and slowly began to broach the sensitive subject on both of their minds: If they were indeed sisters, then how would Vivian have known Mr. Parker?

Mr. Parker was a train engineer and would often be away from home for days at a time. Vivian frequently took the same train he worked on to vacation with her family. So she could have known him for years. Or perhaps she met him just once. Maybe they were friendly, or, who knows, maybe she was raped. These were the theories that Cheryl and Effie Jane tossed around. They wouldn't know for sure until the test results came back. But Cheryl felt in her gut that this was the one.

“I'm feeling really comfortable with where I'm going with this. I feel like I'm going to find answers soon.” That's what Cheryl said to me during our first phone interview, in early July. She had been anxiously tracking the shipment of Effie Jane's kit and knew that it had arrived at 23andMe that Saturday. She had just a few weeks to wait.

Cheryl and Effie Jane's relationship blossomed over that period. As Cheryl described in an e-mail to Sandi, “There are a lot of things about Effie that seem familiar to me, as though we are of the same cloth.”

Cheryl and Effie Jane went to the cemetery where Mr. Parker is buried and snapped photos of his plaque. They also attended an all-day church workshop put on by Cheryl's son, Travis, about how to deal with rejection. “My mom has a hard time believing that we accept her,” Travis says. “But that's because of the deck of cards that she's playing with.”

On July 23 Cheryl wrote to me with the surprising verdict: Effie Jane was not her sister. She was not even a first cousin once removed, as Diane had guessed. The genetic test estimated them as fourth cousins, at most, with just two shared segments of chromosome.

I asked Cheryl how she was feeling about it, and her response read, to me, like she was trying to hide her disappointment: “I am good! I am frustrated, as now we will have to find someone else to test, and wait yet again!”

Effie Jane took the news in stride. “I didn't cry. I didn't have that feeling of being deserted by her,” she told me. And the fact that you don't share much DNA, does that change how you feel about your relationship, I asked. “As far as I'm concerned, she's my little sister.”

Cheryl, too, says she will probably be lifelong friends with Effie Jane. But there was still a hole in her personal history. And it needed to be filled.

 

Effie Jane's test results weren't what Cheryl was hoping for, but they did help her and Diane to focus on the relevant part of Jeannette's family tree. Diane quickly identified another man as Cheryl's potential father, and Cheryl tracked down the phone number of the man's daughter, Rose.

Cheryl called Rose one morning in late July. The conversation went surprisingly well. “She said, ‘Oh, are you saying you might be my sister? Oh, I hope you might be my sister!'” Cheryl recalls. Rose agreed to take a 23andMe test, and they tentatively planned to get together the following day to do the spitting.

Late that evening, Cheryl had an upsetting phone call with Rose. The DNA test had been weighing on her the entire day, Rose said, and she had decided she didn't want to tarnish the memory of her father by taking it. “Of course I was in tears,” Cheryl told me the next morning. “It's like another rejection.”

Cheryl says she understands how Rose must be feeling. “I am nobody to them.” She is now trying to decide whether she should reach out to Rose's late brother's wife, to ask if her children might get tested. Cheryl knows that Rose would be upset if she did that; on the other hand, there may be no other way to find out who her father is. “It will make me feel more complete to know who I came from.”

Though she doesn't fully realize it, Cheryl is playing out the hypothetical scenario painted by bioethicists: How does one person's right to know stack up against another's right to privacy?

 

While she struggles with her search for a new family, Cheryl is trying to mend the tears that her genetic testing has created among the relatives she already has.

In June of last year the
Village News
, the local newspaper in Chester, ran a story about Cheryl's search for her biological father. The article included several factual inaccuracies, as well as a wildly inaccurate description of Joe as a man who “stepped up to the plate making Vivian, as they said then, an honest woman.”

All of Cheryl's sisters were upset by the article. Sandi was upset because of what it implied about Vivian. “[It] shed a somewhat dim light of my mom and some of the report was inaccurate and fabricated,” she told me. “I only want my parents' legacy to be respected.”