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Thursday, July 4, 2013

Is Your DNA Private? It Might Not Be

Vickie Chaplin loads patient samples into a machine for testing at Myriad Genetics Friday, May 31, 2002, in Salt Lake City. (Douglas C. Pizac/AP)

Vickie Chaplin loads patient samples into a machine for testing at Myriad Genetics Friday, May 31, 2002, in Salt Lake City. (Douglas C. Pizac/AP)

Would you want your girlfriend’s parents to be able to test your DNA to find out your ancestry? What if the grad school you were applying to wanted to test for tendencies for mental illness?

Within a few years, the cost of DNA sequencing may be just a few hundred dollars. When it gets that cheap, it will be easy for anyone to get a test.

But should there be legal restrictions on it? And is there a way to keep our DNA private?

Guest:

Transcript

JEREMY HOBSON, HOST:

It's HERE AND NOW.

Almost 30 years ago, Larry Hunter had a warning. He feared that computers - which were just starting to become a part of our lives - were going to present new challenges for personal privacy, and he was right.

Well, now Larry Hunter is professor of bioinformatics at the school of medicine at the University of Colorado in Denver, and he is raising a new red flag. He says we should be worried about the privacy of our DNA. Larry, welcome to HERE AND NOW.

LARRY HUNTER: Thank you very much. It's a pleasure to be here.

HOBSON: Well, it's great to have you, and I want to start with your prediction that in 30 years, our DNA is going to be everywhere. Explain that.

HUNTER: Well, so the technology that allows us to look at and read DNA - we call it sequencing - is taking off the way computer technology took off in the 1950s and '60s. And it's almost equally impossible to imagine what 30 years from now it's going to be like than it would have been for those people to imagine the Internet.

And so we have the vaguest glimmers of what it's going to be like. We can guess a little bit about what the ability to rapidly and cheaply read DNA sequences is going to mean, but it's always hard to know the future.

HOBSON: And do we have the ability to control whether our DNA is out there, as an individual?

HUNTER: No, I don't think so. Everywhere you go, every chair you sit in, every glass you drink from, every place you touch, you're leaving DNA behind. You can't change that. You're constantly shedding hair and skin cells and all kinds of stuff. So you leave a trail of DNA wherever you go.

HOBSON: But somebody would actually have to want to go and get your DNA and put it into some kind of database.

HUNTER: Right. There's two pieces that need to happen. One is I need to be able to take some sample from the chair you were in and figure out what the DNA is, and then I need something to do with it. So just knowing the DNA sequence that was in that chair doesn't tell me who you are.

But there's a lot of databases that are already being collected that you could use to identify the DNA you picked up off that chair. So, for example, the FBI has more than 10 million people in a DNA database. The company 23andMe - which people pay to get their DNA sequenced - announced last December that their aim is to get a million customers this year. So there's going to be lots of DNA and lots of DNA databases out there. It's already happening.

HOBSON: And the cost of sequencing DNA is going way down.

HUNTER: Oh, yeah, absolutely. So it's already possible to sequence an entire human genome for a little over a thousand dollars...

HOBSON: Wow.

HUNTER: ...and that price is going to continue to fall. In the next few years, it'll be $100, and basically free.

HOBSON: So what can we be doing? Or should we be trying to keep our DNA secret? I mean, it sounds like it's not very easy to do that.

HUNTER: I don't think you can keep DNA secret. I think what we need to do as a society is figure out what are legitimate uses and what aren't legitimate uses, and we've already made some good steps in that direction. There was a law passed in the United States a few years ago called the Genetic Insurance Nondiscrimination Act, which says insurance companies - for life insurance and health insurance - can't discriminate against you based on any genetic information.

And that also applies to employers. They can't discriminate against you on genetic information, as well. And we're already seeing the first Equal Employment Opportunity Commission hearings about a woman who claimed she was fired because she had the BRCA1 breast cancer gene, and brought a claim against her employer by GINA, this Genetic Nondiscrimination Act. So I think that's a great start.

We already have some rights not to be discriminated against, based on what's in our DNA. But there's also some negative parts. The Supreme Court just ruled that police can collect DNA from people they just arrest who are still presumed innocent, haven't been convicted of anything. That's how the FBI gets to have DNA samples on 10 million people. Only about a million of those were convicted of anything.

HOBSON: Well, does the recent Supreme Court decision change things significantly?

HUNTER: It does. It validates a practice that a lot of people didn't approve of, and has opened the door to DNA collecting from pretty much everybody who has any contact with the police. If somebody could be fingerprinted, they can have a DNA sample taken against their will.

HOBSON: So what should be done by regulators at this point? I mean, how much work needs to be done to make sure that there are appropriate laws and privacy regulations in place?

HUNTER: I think the regulators need to get educated. The real problem is the people who make policy here don't really understand the technology or where it's heading, and that's a critical problem. Usually, legislation comes in response to something bad happening, and we'd really, I think, like to prevent the bad things from getting started.

To use an analogy with privacy collection and electronic information on the Internet, is it going to be reasonable for companies to want to advertise to you based on your DNA? And I think it's pretty clear that evolving technology is going to allow us to identify people who have a weakness for a certain kind of pitch, or it might be problem gamblers, so that casinos want to come advertise to them, or...

HOBSON: And you could tell that from DNA?

HUNTER: Well, it's not clear yet, but it's not impossible. It's - I think it's likely that we'll be able to make conclusions, inferences about people based on their DNA that will have real effect on how they act in the world, how advertising works on them, all kinds of things that matter to lots of big companies. And so we're going to have to stay on top of our growing understanding of what these DNA differences between us mean and make sure that it evolves in a way that's good for society and doesn't just privilege a few.

HOBSON: What are people supposed to do with this information?

HUNTER: I think we need to separate concerns about the government use of DNA versus commercial use of DNA. And the government - we've kind of settled into we're going to allow the government to use it for criminal justice. And we could try to limit the ability of police and the FBI to collect DNA, but I think that the Supreme Court decision has told us that that's not going to happen. Commercial use of DNA is much more up in the air right now.

And so the way to protect yourself against that is if you're going to go to ancestry.com or 23andMe, one of these DNA sequencing things or, for that matter, get your DNA sequenced because you're concerned about some genetic problem your unborn child might have, be aware of who's keeping that information and what uses they're allowed to make of it, and try and get some - to give them back to you when it's done or destroy it.

And then with respect to, you know, secondary commercial uses like insurers that's illegal - pay attention - if you feel like your employer or your insurer has discriminated against you because of something genetic, you have legal rights. And as to, you know, how the advertising thing and marketing is going to play out, that's still in the future. It's still too expensive for that. But be aware and think about it as it comes.

HOBSON: Would you ever get your DNA sequenced?

HUNTER: Oh, sure. I'm in the personal genome project, so I donated my DNA to science. It's - George Church at Harvard has been collecting thousands of human volunteers and information about their medical records and the like and trying to understand what aspects of one's genetics influence how you get sick and what the best way to treat it is. So I like to volunteer for medical experiments. I think that as a scientist and a researcher, I kind of owe it to the world to be a subject as well as a researcher.

I'm hopeful that nothing bad comes of that and really good stuff comes of that. I think the chance to have really deep insights into human history and who we are and how we get sick and how we can get better can come from this. It's a good thing. We just need to be aware of the possible downsides.

HOBSON: Well, Larry Hunter, professor of bioinformatics at the Colorado School of Medicine in Denver, thank you so much for joining us.

HUNTER: It's been my pleasure.

HOBSON: And up next, not to be overlooked, the piccolo's role in "Stars And Stripes Forever." You're listening to HERE AND NOW. Transcript provided by NPR, Copyright NPR.


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Robin Young and Jeremy Hobson host Here & Now, a live two-hour production of NPR and WBUR Boston.

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