You Own Your Own Genes. Now What?

As biomedical technologies get cheaper, it becomes easier for non-specialists to get access to them; as the technologies get "smarter," it becomes easier for non-specialists to use those them. We see this happening with devices such as inexpensive defibrillators, now standard issue on many airplanes, which are sufficiently automated to allow people with no medical knowledge to save the lives of heart attack victims in mid-air. This is pretty clearly a good thing. But we’re also now seeing this happen with genetic testing, and whether or not it’s for the good remains to be determined.

DNA Direct is a San Francisco company founded by Ryan Phelan, who started the website which became WebMD. For a couple hundred dollars, DNA Direct will send you a kit to let you take a sample (typically a cheek swab) and send it back for anonymous testing for genes predisposing you to a variety disorders including, starting this week, breast cancer. Counseling is included with the results, which are delivered via the web. No information gets added to your medical records, no insurance companies get notified. The logic here is straightforward: fear of genetic discrimination could make people avoid taking tests which could help them make lifestyle choices to avoid potential problems. Anonymous testing side-steps that problem neatly.

We know that genes are not destiny -- one's proteome, one's environment, and one's behavior also have a great deal of say in medical outcomes. But even if they aren't predictive, they are suggestive. That's where good counseling can be the most beneficial: understanding which risk factors are meaningful, and which aren't. DNA Direct claims to provide abundant information and counseling resources; some people remain fearful that any over-the-web intervention will be insufficient. And divulging sufficient amounts of information about one's life to make the counseling useful undercuts the anonymity.

DNA Direct (and its inevitable competitors) is another step towards the era of transparent physiology. It will soon be possible to run a full genetic scan of individuals quickly and inexpensively. Down the road, we'll see individual proteomes and brain maps. In the not-too-distant future, you'll be able to carry around a card (or whatever data storage medium is in vogue) containing the component information of you. While there are questions about precisely who would own that data, the real unanswered question is more basic: what would you do with it?

We are moving along quite nicely in the development of data acquisition tools for the world around -- and inside -- us. The development of tools and systems for analyzing that data, telling us what it all means, seems to be moving along less swiftly. What results is not so much "information overload," making it hard to find what you need, but "information overwhelm," making it hard to figure out what's important and what isn't. The real breakthrough with these technologies will come not when it's easier and cheaper than ever to accumulate the data, but when it's easy and inexpensive to understand the data.

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Jamais Cascio is a fellow of the IEET, and a professional futurist. He writes the popular blog Open the Future.