Ready or not, personal genomics is here

A new editorial in Nature comments on the rapidly expanding field of personal genomics. The appearance of this industry has taken many observers by surprise; indeed, the authors note, "Rarely have basic discoveries morphed into a commercial product quite so swiftly."

The speed of the industry's growth has led to many calls for heavy regulation, which (I think) would be a disastrous approach for consumers. Nature agrees, and offers a positive alternative solution:

If consumers are to reap the benefits that genetic testing can offer, they need understandable information about the basis, validity and limitations of the tests. One proposed structure for providing this information is a publicly accessible registry into which test-makers would be required to upload data about their tests and the studies that back them. This information should be updated as genetic risks are changed or refined, as inevitably they will be.

There are already some similar databases that currently exist (such as the Wikipedia-like SNPedia) or are being planned (e.g. GEN2PHEN [PDF]), although none of them are yet comprehensive or rigorous enough to fulfil the needs of genetic test consumers. It would be great to see these and similar efforts promoted and funded, or perhaps even combined in a central registry that supplements slow, careful expert annotation with the faster but looser community-driven SNPedia approach. It would almost certainly be more cost-effective to build on existing projects rather than developing a new registry from scratch.

However the registry develops, Nature's point is that the solution to shonky genetic test vendors isn't just legislation (which, if too heavy-handed, will also negatively affect legitimate companies and limit consumer choice), it's also information. Providing potential customers with reliable data about the efficacy of genetic tests and allowing them to make their own decisions protects consumers without sacrificing their autonomy. This is certainly my philosophy, and the motivation behind Genetic Future - it's very reassuring to see that this sentiment is shared in the lofty reaches of the Nature editorial board.

The article finishes with pertinent advice to consumers:

In the meantime, online shoppers who buy genetic tests would do well to keep asking themselves whether the science is, indeed, ready.

Before buying any genetic test, research widely about its pros and cons, and think hard about whether the information you receive will really be worth the money you spend, or whether you'd be better to save your money until better tests are available.

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