Good only for entertainment value… and, of course, the government

3 minute read

Genetic Future points out the minuses of a commercial gene test offering, which promises to tell parents whether their kids have alpha-actinin-3 gene combinations that are well-suited to Olympic sprinting. Since Dan is an expert on this gene, he can say with some authority that the test isn’t adding much value for parents who want to make their sub-8-year-olds into the next Usain Bolt. Plus, for a few dollars more the 23andMe test (and for that matter, other SNP screens) will give you the same information plus many other genes.

Razib, in fewer words, points to the post and says:

Remember those astrology infomercials on TV? "For entertainment purposes only!" Over the next few years many firms will piggy-back on the cultural prestige of science to make a quick buck.

Meanwhile, the Associated Press reports that Obama is likely to “broaden genetics role in medical care”:

Obama is also interested in the role that personalized medicine could play as an element of changes in the broader health care system.
"The issue of getting the right treatment to the right person goes with his whole emphasis on health reform," said Mark McClellan, a noted Republican health care expert who served President George W. Bush as Medicare director and head of the Food and Drug Administration. "If we're thinking about reforming the health care system, we should be thinking about what medicine will be like down the road when health care reform is fully implemented," McClellan said.

The article is purely speculative with respect to Obama’s actual plans. It does review Obama’s efforts as a senator to introduce legislation that would “coordinate the policies of federal agencies whose decisions have an impact on” the use of genetic tests in medical treatment. In other words, will Medicare pay for your genetic test? And should the FDA regulate it? A federal agency capable of getting Medicare and the FDA to use the same protocols for genetic information would seem fairly likely to impose strict record-keeping requirements on commercial gene tests.

Remember that genetic tests presently aren’t very useful for predicting complex disease phenotypes, and this problem won’t be going away soon. Direct-to-consumer gene testing companies so far seem to be playing the game as if they were selling nutritional supplements: there’s some nebulous, undefined benefit related to health, but few specifics. Or as genealogy research aids – no fear of regulation there. That lies behind Razib’s comments about “entertainment purposes only,” which I would say is pretty much accurate at this point. There’s little or no compelling health-related information in today’s genetic tests for ordinary consumers – which is to say, people who are not otherwise at risk of inherited disorders based on family histories.

From this perspective, Obama has been trying to draw up regulations for something that doesn’t exist. But like any good planner, we should consider what is likely to unfold in the future, when we can go beyond the present genome-wide association tests toward interaction analyses of multiple genes and phenotypes. Possibly we’ll do better at predicting the risk of complex diseases, and we’ll certainly have tests at a fraction of today’s prices.

Providing diagnostic value for SNP screens or genome sequences will take a massive effort at standardizing information about joint gene-phenotype associations. Direct-to-consumer gene testing companies presently differentiate themselves based on the different information they provide to their customers. That approach works as long as there is little of value in the results – the companies today are succeeding or failing on the basis of the communities of customers they are building, with the stories of customers providing the best advertisements. That’s the nutrition supplement market.

But that approach will start to fail if genetic tests start to allow serious risk mitigation in health maintenance. If two companies provide divergent information to customers, in a way that impacts the customers’ interactions with their physicians, I expect that the outcome will be some massive lawsuits and further federal regulation. If the government becomes the health care purchaser – and with Medicare it already is the largest – we can expect to see early federal intervention in this market, focused upon standardizing genetic information provided to physicians.

“Entertainment value” indeed.