Make Your Genes Public - George Church

You head the Personal Genome Project. 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 - the inability to recognise faces - 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's 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, "Turn left", and I don't even need to know what street I'm on. Our genomic system will say, "Take this drug and not this one" or "Go get a mammogram".

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

No. To me it's 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't do this. Revealing names and faces is optional. Everything else is not.

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

People who are concerned about their privacy probably shouldn't be volunteering for medical research. The idea that anonymity can be protected is from an era that is long gone, when people didn't have computers that allowed them to snoop around. False assurance of anonymity is really worse than no assurance."

-Rest of interview here