How generous will you be with genomic data?

October 15, 2010
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In the coming years, we’ll in inundated with data about our bodies. In The Numerati, I followed Intel’s efforts to create data streams describing the lives of elderly couples. By studying the patterns of people’s movements, keystrokes, voices and daily routines, they hope to diagnose diseases and conditions before they’re apparent–and to respond to them. That raises a host of questions, most importantly: Do you want to be monitored (for your own good)?

In the coming years, we’ll in inundated with data about our bodies. In The Numerati, I followed Intel’s efforts to create data streams describing the lives of elderly couples. By studying the patterns of people’s movements, keystrokes, voices and daily routines, they hope to diagnose diseases and conditions before they’re apparent–and to respond to them. That raises a host of questions, most importantly: Do you want to be monitored (for your own good)?

The second river of data will come from the genes. Within 10 years, it’s estimated that each of us will be able to get our entire genome sequenced for less than $100. (Now, by contrast, early adopters pay services like 23 and Me for a much abridged read of their genome, a so-called genotyping, which costs $429.) In order to improve national health and spur research, certain governments could conceivably demand that citizens turn over their genomes. I don’t see that happening in the United States. But still, each of us will face choices about how much we want to learn about our genomes, and how much of that we’ll be willing to share.

So I’ve worked up a survey, and I hope you’ll participate. As you’ll see, I’ve divided people into three groups: those eager to share their genomes for the good of health and medical research; those who might be willing to share selectively, and a third group that feels queasy about gathering the genomic information, and perhaps unveiling some unwelcome surprises ahead. If you don’t feel any of these categories sum up your feelings, please define your own in comments. Thanks.