Friday, October 18, 2013
BROOKE GLADSTONE: The fact is your spit is more important to 23andMe than your 99 bucks. Patrick Chung, a 23andMe board member, told Fast Company that, quote, “Once you have the data, the company does actually become the Google of personalized health care. Genetic data on a massive scale sold to drug companies, hospitals and even governments is where the real growth potential is.” So, inevitably, the issue of privacy rears its head. While PJ and I wait for our results to come in, WNYC Reporter Mary Harris brings us a cautionary tale about a family, of sorts, reunited by a gene databank, in this case, not 23andMe.
MARY HARRIS: Lance was 38, single, living the life of a typical tech worker in California, long days in Silicon Valley, Ultimate Frisbee and Bud Light on the weekends. And then he got this email.
LANCE: Yeah, I mean, even remembering it now, my heart starts to pound a little bit.
MARY HARRIS: The subject line, “Interesting information.”
LANCE: The email reads, “Lance, where to begin? My name is Ryan Kramer. I'm 15 years old, and I live in Nederland, Colorado. Fifteen years ago, my mother was impregnated with a sperm donation from California Cryobank Donor 1058. You may want to sit down for this next part.” Ah, it’s like a science fiction movie. Nobody e-mails you out of the blue to tell you you're their father.
MARY HARRIS: He’d been an anonymous sperm donor. Lance’s son Ryan and Ryan’s mom, Wendy, had found a way to track him down by using Ryan’s DNA and the DNA in public databases. Ryan did it to answer a long unanswered question.
RYAN: I feel like my curiosity came in waves throughout my upbringing. There was always like this, this real desire to see a picture or to meet this person.
MARY HARRIS: For Ryan's mother, Wendy, it was more than that.
WENDY: I felt like I owed it to him. I brought him into the world with that particular set of circumstances, and I felt like it was my responsibility then to help him find the answers he was looking for.
MARY HARRIS: Wendy spent nearly a decade helping Ryan dig up clues.
WENDY: So I would call the sperm bank like every year, every couple of years, just to see, anything new, anything…
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MARY HARRIS: She had some basics. The cryobank identified Ryan’s father as Donor 1058.
WENDY: Somebody there, inadvertently, told me that there were at least, I think at that point, either three or nine half-brothers and sisters out there. And I thought, oh God, you know, as soon as I tell Ryan, of course, he’s gonna say, okay, when can I meet them.
MARY HARRIS: Knowing that there were half siblings out there sparked an idea for Wendy and Ryan, way back in 2000. What if they could connect with these genetic brothers and sisters, track down different branches of their donor’s family tree? So Wendy started a Yahoo group. She called it the Donor Sibling Registry. It was a place where kids like Ryan could share information about themselves and their donor fathers.
WENDY: So basically, we created a place where you could be found, if people were looking for you. If there are donors who want to know any of the children they’ve helped to create, why shouldn't they have a way to make mutual consent contact?
MARY HARRIS: For a month or two, Wendy and Ryan were the only people logged in, but then a story in the local news led to calls from Good Morning America, Oprah, 60 Minutes.
CORRESPONDENT: Ryan set off on a mission to find his donor dad.
CORRESPONDENT: Ryan Kramer stepped out of the shadows, seeking answers -
QUESTION: You said that there were traits that obviously didn't come from you.
MARY HARRIS: With the help of fellow donor kids, Ryan's file folder on 1058 grew fatter.
RYAN: Anywhere that we could possibly gather any sort of additional information that could eventually help us figure out who he was, that’s sort of something we did.
MARY HARRIS: They even did a public record search for all the men born on their donor’s birthday, in their donor's birth city.
RYAN: And we got back this list of – and it was probably about 350 people, and we thought, you know, there’s a pretty good chance that one of these guys is my donor.
MARY HARRIS: And this is where DNA made all the difference. The TV appearances, the Internet activism, even the record searches would have been useless if Ryan hadn't found his way to an online DNA database. Ryan sent a sample of his saliva to a website that promises to uncover your ancestry. For 99 dollars, they’ll tell you if you’re Native American. Make it 169, and they’ll check to see if you’re a distant relative of Thomas Jefferson. He didn't expect much.
RYAN: One of the other features that this website had was this some sort of relative finder type of feature, where it would notify you if anybody else was related to you.
MARY HARRIS: Sure enough, he began to connect with distant family, and the two men who were Ryan's closest genetic relatives had something else in common, a last name. Remember, Wendy and Ryan had done that public records search, and because last names are passed from father to son, father to son –
WENDY: One of us had a thought: I wonder, on that list of all the males born on that day, in that county that your donor's name is on, I wonder if there's anyone on that list with that last name.
MARY HARRIS: Lance was the only match.
WENDY: At that point, we’re sort of dumbfounded, like, oh my God!
MARY HARRIS: Neither Lance nor his close relatives had ever put their own DNA online, but just a snippet of shared genetic code from distant cousins with a common last name was enough to reveal his identity. Ryan says their research proves that, at least for sperm donors, the notion of privacy may be obsolete.
RYAN: Because there's always the possibility that at some point somebody’s gonna come knocking and, you know, sort of like I did, want some answers.
GEORGE CHURCH: My favorite one is number 5 here, where the 15-year-old kid was unsatisfied…
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MARY HARRIS: George Church is a geneticist at Harvard. Here he is at a conference on innovation, in 2010.
GEORGE CHURCH: …found a surname, found his father on the first shot.
MARY HARRIS: He says the implications go far beyond sperm donors, because the rapid growth of DNA testing may make privacy more elusive for all of us.
GEORGE CHURCH: If a 15-year-old boy can do it, then anybody can do it. Now, this kid had an unfair advantage in that he knew himself. He could analyze his own DNA. But I think, increasingly, that’s going to be possible to figure that out, for people, even people that you don't know.
MARY HARRIS: But Church thinks losing a little privacy might make all of us a lot healthier.
GEORGE CHURCH: Privacy is kind of a new invention. It’s, it’s not something that’s been with us forever. You know, if you go to tribes, even today, or even small towns today, pretty much everybody knows everything, right? You don’t want your privacy to be held against you. If no one knows that you’ve got something unusual going on, then you’re not gonna be helped. So if there are lots of computers crawling around, looking at your data, then there's a chance they’ll catch something that you didn’t catch.
MARY HARRIS: Back in California, Ryan's father Lance is still trying to make up his mind about the benefits and risks of being genetically outed.
LANCE: It is very difficult to imagine that anyone will be able to keep their DNA lineage anonymous. It’s something they’re gonna live with in the future, we’re living with today, [LAUGHS] apparently. He’s my donor offspring, and he’s a great kid. He’s my younger half clone.
MARY HARRIS: But even though he’s already been identified, he asked us not to use his last name, because he knows he has other children out there, and he’s not sure how many more he wants tracking him down. For On the Media, I’m Mary Harris.