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Medical Research And The End Of Privacy


The current issue of Science Magazine is announcing the end of privacy. Each article focuses on a different way our society is becoming more interconnected and vulnerable - in finances, national security, even medicine. Jennifer Couzin-Frankel writes about the privacy concerns for the hundreds of thousands of volunteers who donate their DNA for medical research.

JENNIFER COUZIN-FRANKEL: The hope is, of course, that there's potential for a big payoff, because we're talking about a lot of very common diseases - cancer, heart disease, diabetes. There's certainly a lot of interest in identifying the genes that could help cause disease. There's also interest in using the genes to identify new drug targets.

RATH: Can you explain the concerns people have in terms of giving up their DNA for research?

COUZIN-FRANKEL: One is is what I'm giving up private? Who's going to have access to the DNA sample that I'm handing over? And another question people might have is what's going to happen to the sample? How much control do I have over who studies it, what they do with it?

RATH: And why would I care about the privacy of my DNA?

COUZIN-FRANKEL: You know, it really depends. Some people don't care. And people are posting all sorts of things about themselves online these days on Facebook and elsewhere. For other people, you know, DNA is what makes you you, and it may feel very personal and almost intimate. It can reveal something, although it's certainly not everything, about your risk of certain diseases, so people may have concerns there as well.

RATH: Until recently, there was a belief in the medical community that it was possible to achieve genomic privacy. First, can you explain what genomic privacy means?

COUZIN-FRANKEL: Yes. That means that if you donate your DNA to a research study and your name is disconnected from it and the DNA sample's assigned a number or some other identifier, it cannot be linked back to you.

RATH: And you write that the belief in genomic privacy was shattered about two years ago. Can you explain what changed?

COUZIN-FRANKEL: People were already a little wary that this might be an issue. But a researcher and his colleagues basically were able to identify a handful of people who had signed on to participate in a research study. And in this case, their DNA sequence was publicly available online. And this research group was able to sort of track back and match it up to some sequences that had been posted in a genealogy database, which - people often use them to develop their family trees. And through that matching, they were able to identify these people by name and also identify a number of their relatives, even fairly distant relatives.

RATH: So what are researchers doing or what can they do to address people's privacy concerns?

COUZIN-FRANKEL: One group is looking at other models out there that are not in medicine but that have developed trust, so, for example, Airbnb. You know, you can sign on to go live in someone else's house for a week or even have someone come and live in your house when you're not there. You have no idea who this person is. But somehow those models have developed something of a trust system.

And there are some researchers who are interested in looking at that. You know, can we draw on those in research? Another example is - the study's called RUDY. It's based in the UK, and they're trying a different model, allowing for a little bit more patient engagement and patient control in their study. You know, normally if I donate DNA and it can be kind of farmed out to a number of different researchers, anyone could access my DNA if I've, you know, given permission for that.

But in this case, the researchers involved will give participants a chance to learn whether someone is even studying their DNA sample. Is it even being used? They're also given the chance to opt in and out of different aspects of the study. They could say - you know what? I'll fill out the health questionnaire, but I really don't want to give you my MRI scans, for example.

RATH: Would you make your own genome publicly available?

COUZIN-FRANKEL: (Laughter) Probably not right now, but I also don't post that much on Facebook either.

RATH: Jennifer Couzin-Frankel is a writer for Science Magazine. Jennifer, thanks very much.

COUZIN-FRANKEL: Thanks, it was a pleasure talking with you. Transcript provided by NPR, Copyright NPR.