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George Church helped develop the technology that made sequencing human genomes affordable. Now he wants volunteers to open up their medical records. He tells Peter Aldhous why privacy is an outdated concept in medical research and how Ozzy Osbourne is a science educator

You head the . How will this lead towards personalised medicine?

The goal is to collect genome, environment and trait data from as many people as possible, and provide that as an open resource for research. For example, someone who specialises in prosopagnosia 鈥� the inability to recognise faces 鈥� can find people with the condition in our project and study its causes.

You were the first volunteer. How is recruitment coming along?

So far we have 13,000 volunteers, of whom 1000 have their trait data online. Fifteen people have had their genomes completely sequenced or almost completely. We have a paper in review looking at these people and others with full genome sequences, analysing over 2000 genes that are highly predictive of future health.

What will this achieve?

When medical geneticists see patients, they have to do a deep dive into the scientific literature, spending hours figuring out what their genes mean for their health. Our paper is about making a system to turn personal genomic information into something you can act upon. It鈥檚 like GPS. The first time I used a GPS device it told me where all the satellites were, and my coordinates. Now my GPS says, 鈥淭urn left鈥�, and I don鈥檛 even need to know what street I鈥檓 on. Our genomic system will say, 鈥淭ake this drug and not this one鈥� or 鈥淕o get a mammogram鈥�.

鈥淚 want a system that turns genome information into something you can act on鈥�

Has it been hard to find volunteers willing to put their medical records and genome sequences online?

No. To me it鈥檚 inspiring that there are so many people willing to go ahead, because we make it very clear what the risks are. You have to pass an exam to show you understand this to get into the study. If you think that you are in danger of being discriminated against on the basis of your genome, then you shouldn鈥檛 do this. Revealing names and faces is optional. Everything else is not.

It鈥檚 very different from the promises of privacy in conventional research.

People who are concerned about their privacy probably shouldn鈥檛 be volunteering for medical research. The idea that anonymity can be protected is from an era that is long gone, when people didn鈥檛 have computers that allowed them to snoop around. False assurance of anonymity is really worse than no assurance.

Even before this project, you put and online. Are you an 鈥渋nformation exhibitionist鈥�?

I鈥檓 actually fairly private. My impression is that people who volunteer to open their personal data for research are not exhibitionists so much as altruists. There is some privacy in numbers, though, because if there are enough of us sharing our medical records it becomes boring to look through them.

Has any particular incident convinced you that providing open access to personal information brings more benefits than risks?

I try not to make decisions based on anecdotes, but here鈥檚 one that is interesting. In 2004, I was giving a lecture and a haematologist who had seen my web page told me I should get my cholesterol checked. He had seen I had a high reading and was taking a statin, and told me that statins sometimes cause tissue damage or may not work at the initial prescribed dose.

Sure enough, it turned out that the statin wasn鈥檛 doing any good, and there was some tiny evidence of damage. So we doubled the dose, and I switched to a strict vegan diet. Then, to deal with the damage, I started supplementing my diet with .

Your records also reveal that you subsisted on a semi-synthetic diet based on corn starch for a number of years. Why was that?

In the summer of 1974 I was taking a quantum physics course at the Massachusetts Institute of Technology and volunteered for a study into a diet low in the amino acid leucine. I learned a lot about nutrition, and I wanted to keep learning, so after the study was over I carried on with a similar diet but with normal leucine, trying to make sure I had everything that was necessary for life. Actually, I forgot something. One morning both of my calves cramped up simultaneously. I limped over to my desk and pulled out my diet sheet. I thought about muscle physiology, and oops, no potassium!

Isn鈥檛 going on a diet like that a bit extreme?

I probably would admit that it鈥檚 extreme today, but I was just curious. I was a teenager, and teenagers take risks. Instead of riding a motorcycle I participated in a study of leucine deficiency, and then, accidentally, in a study on potassium deficiency.

Did conducting experiments in your personal life inform your approach to science?

Somebody has to be a research subject and why shouldn鈥檛 I, as a scientist? I felt it was a way of giving.

Were there any setbacks in your early scientific career?

It鈥檚 easy to be dismissed as being unfocused, especially when you are young. I would occasionally get thrown out of class for asking questions that the lecturers didn鈥檛 like. But more often I got into trouble for falling asleep, because I am narcoleptic. The combination of being distractable, inquisitive and sleepy is not ideal. I eventually flunked out of graduate school at Duke University. Fortunately, I had earlier turned down Harvard. I guess Harvard figured that they had accepted me once and I hadn鈥檛 really changed. Actually, the only thing that had changed was that I had written five papers. They said, 鈥淵ou鈥檙e in鈥�, and that was it.

You are known for taking on a diverse range of projects. Where did that come from?

I had this feeling that everything could be connected. When I hit college I found the killer example 鈥� crystallography 鈥� which combined physics, chemistry, computers, automation, biology and medicine. I decided that I was going to apply automation and computers to the rest of biology. Today I would describe my work as reading and writing genomes.

There is an obvious comparison with Craig Venter. Do you see him as a rival?

It鈥檚 not a rivalry. It鈥檚 mutual respect. I tend to make technology; he is more productive in using it. There are certain similarities, with us both making our genomes public. He did it first, partly because he could spend $500 million on his genome. I waited until we could publish it at $1500. I鈥檓 a cheapskate.

Now the buzz is around synthetic life. Venter has transplanted a synthetic genome into a bacterial cell. What happened to your blueprint for building a completely artificial cell?

We are looking at 150 genes that run the synthesis of DNA, RNA and proteins. They are probably sufficient to get evolution in an artificial cell. Where it stands now, although we haven鈥檛 yet published, is that we have made synthetic ribosomes, which make proteins. We haven鈥檛 yet made a self-replicating ribosome, but once we do, wrap that in a membrane and you have got something that is isolated and can presumably evolve. That鈥檚 not a primary objective, though. We are more interested in using synthetic ribosomes to make new polymers.

Recently, your company sequenced 鈥榮 genome. Was this just a publicity stunt?

Ozzy has an audience. I鈥檓 an educator and I believe in educating more than a few students in class. One finding was that I have three times as much Neanderthal DNA as him. It鈥檚 silly, but in a good way. I think it is important for us to realise that we are not the only humans that have ever existed. One of Ozzy鈥檚 quotes was that if Neanderthals could get laid then there鈥檚 hope for us all!