Personal Genome Project Posts DNA Info Online

IRA FLATOW, host:

You're listening to Talk of the Nation, Science Friday. I'm Ira Flatow. I'd like to introduce you to my next guest, George Church, he is professor of genetics at Harvard Med School. He has green eyes, is right-hand-dominant, is narcoleptic and takes multivitamins. And that's just the beginning of what we know about Dr. Church because he has put his genome online, we can all see it. And his new project encourages you to do the same thing too. Do you want to put your genome online? Well, we'll talk about it.

The personal genome project offers to sequence pieces of your DNA in exchange for personal information about you, including your medical history, your diet, your physical traits you have to be ready to part with that information. The other part of the bargain is that you have to make all that information as I say, public, we all get to see it. Sound creepy, too creepy to you? Well, the project already has 10 volunteers and about 6,000 people are waiting on a list to participate, standing in line. Dr. Church joins us from the Gairdner Foundation Symposium in Toronto. Welcome back to the program, Dr. Church.

Dr. GEORGE CHURCH (Director, Personal Genome Project): Hello.

FLATOW: Tell us about the objectives of the project. What do we gain by reading everybody's genome online?

Dr. CHURCH: Well, this is part of a project that has goals of bringing down the cost of genomics, so that everybody can afford it the way we brought down the cost of computers, so that everybody could afford them. And make it more interpretable, basically to provide reasons to have genomes in computers which is - that you can connect to other people's information in particular find correlations between medical and non-medical traits in your genes. This requires some level of sharing, which is not something that can be done in the laboratory just with chemicals as it actually requires community participation.

FLATOW: Do you find the community eager to jump in or do you have to talk them into it? I see you have 6,000 people waiting online.

Dr. CHURCH: We definitely don't talk people into it. We spend most of our time talking people out of it. We only want the most enthusiastic and people who really know what they're getting into.

FLATOW: And is this database going to be midsized? What will happen to the database of all these people and their traits?

Dr. CHURCH: Well, we hope it's going to be like Wikipedia and Google and other things that people depend on, and many people contribute to. We're trying not to restrict who we think - to researchers who think exactly like us, maybe you know, too specifically to kidney researchers. We actually want broadly defined, social scientists, computer scientists, all kinds of people to look at this and contribute to looking at it from many different angles - the way you see in public web resources.

FLATOW: I'm trying to understand that a little bit - if you have all these thousands of people and their databases. What do I see that certain people have red eyes, some people are left handed, some people have, you know, like to eat sushi. What will I learn from this giant database?

Dr. CHURCH: Well, the first set of things that we're going to focus on are the most debilitating diseases that affect the largest number of people. So very common diseases are something that requires a fairly simple set of information, but lots of it. And - but, as people get interested in other things that are genetically determined in conjunction with environmental traits - environmental components which we'll also track, we can extend this to almost any trait that you can imagine that has any genetic and environmental components.

FLATOW: Say, you might be able to see if you go on this Wikipedia sort of thing whether you're susceptible to a disease or an allergy or something like that.

Dr. CHURCH: Exactly.

FLATOW: And you could see also whether your friends are, if they're on that line too.

Dr. CHURCH: In principle. That's not the objective, like I've said, it might be an outcome. Yes.

FLATOW: Yeah. But since it's all going to be public, I mean, isn't that something that people should be concerned about? That if all their information is public, you'll see the bad stuff with the good stuff?

Dr. CHURCH: Absolutely. Anyone who isn't sharing that kind of information with their friends should probably think twice.

FLATOW: And how long will this project run for?

Dr. CHURCH: I'm hoping that it will make major progress in the next 5 or 10 years and it may go on forever. I mean it's really a matter of how useful it is and how long and how quickly it moves.

FLATOW: And how did someone get on the list here - if they wanted to become part of your database, what do we have to do?

Mr. CHURCH: Well, the first step is to go to personalgenomes.org, it's a simple website personalgenomes.org. And then they'll take the test, the test is fairly simple. It might require some preparation for some people. You can it as many times as you want, but you have to get a hundred percent on the test to make sure you know what you're getting into. And then enter trait data, things like what ailments you've had, what drugs you've been prescribed. And then finally, some tissue samples will be taken. And the genome sequence is derived.

FLATOW: So when you say you have to get every question right, you want to make sure people understand what they're getting themselves into.

Mr. CHURCH: Exactly. The risks and the benefits of the study and enough knowledge, we don't expect them do necessarily be the world's experts in genetics but enough knowledge of genetics so they can explain to their family what's going on and make sure that they have - the family is interested in this as well.

FLATOW: Now you've had your genetic information online for a while, have there been any unintended consequences for you?

Mr. CHURCH: Well, even before I put my genetic information - I think you know in a certain sense at this point, your trait data is even more informative to the general public than the genetics because not everybody is an expert on genetics. And that's point of the study is to make the correlations. And there has been at least one interesting anecdote that came from having my cholesterol - my cardio-vascular information online, which is a hematologist from Seattle kind of noted that I was not doing my cholesterol medication surveillance properly. And I went back to my primary care physician, and she said oh yeah, that's absolutely right. Let's do this test. And that changed the way that I was dealing with this and probably added several years to my life. So far that was - there aren't too many anecdotes and certainly not statistics but it's pretty exciting the possibilities there.

FLATOW: So people could see who - just scan through some other person's databases and give them medical advice just from looking at the information that's up there.

Mr. CHURCH: Right. I mean you need to have some way of filtering this. This was a, you know, a board-certified hematologist. And I checked out whatever he said with my primary care physician. Going forward, there will probably be software that does this in concert - again with your primary care physician, and the software will be written.

FLATOW: I have a question for you from Ted in Athens, Ohio. Hi Ted.

TED (Caller): Hey there.

FLATOW: Hi there.

TED: I have a question that is, is this database going to be able to be searched by name? And if so, like if I can, you know, look for somebody's name. And if so, is this a danger to employees if employers want to search them. Because now, googling an interviewee is pretty - is somewhat of common practice. And is this going to put people in jeopardy of not getting a job because they might have a debilitating disease?

FLATOW: Good question.

Mr. CHURCH: So, yeah, great question. We are not encouraging people to put their name online, but we are encouraging - let's imagine that scenario where their name is attached their data. Because like almost any medical research, there are ways that given a rich data set, you can figure out who the person is. And there's many studies that have shown that this can be done. So we consider this actually a protection so that people who aren't OK with that understand it. In addition - so people are free to put their name there, and third parties are probably enabled to figure out what the names are. But in addition, there's this genetic information non-discrimination act, which was just signed into law by both Houses of Congress and the president. And this prevents employers and insurance companies from discriminating based on genetics. Now they've always discriminated based on pre-existing conditions, but that's something if they care about then they'll ask you about it. And then it's up to you as to whether you're going to tell them what they want to know or not.

FLATOW: So they can't look at the genes, I can see by that gene, you have a pre-existing condition.

Mr. CHURCH: No. They can ask you about your pre-existing condition. And then most people are, you know, required to answer that they feel like they're required to answer that question. Some people refuse to answer those questions.

FLATOW: Do you eventually think you're going to be charging for this service or will people be able to create some useful product out of your service they might charge for?

Mr. CHURCH: Well, the intention, this isn't - personalgenomes.org is a non-profit organization. The intention is to make it freely available, but to encourage everybody to raise money for their share and maybe a few other people kind of the way you do a walkathon and get your friends and associates to help. You know, there are real cause.

FLATOW: Right.

Dr. CHURCH: But we're trying to not make too much of a burden on any individual person because we want a very diverse set of people genetically and geographically and so on.

FLATOW: Well, good luck to you Dr. Church.

Dr. CHURCH: Thank you.

FLATOW: Thanks for taking time to be with us.

Dr. CHURCH: My pleasure.

FLATOW: We were talking with George Church, professor of genetics at Harvard Med School who is working on a personal genome project. And if you like to sign up for it, you can go to our website, it's sciencefriday.com, we'll have a link there that'll take you right to the personal genome project and you can take the test and see if you get a hundred. Transcript provided by NPR, Copyright National Public Radio.