Is Genetic Info A Dangerous Commodity?

Ronald Bailey, writing for Reason Online: You Can’t Handle the Truth: Do genetic tests need more federal regulation?

Worth reading in its entirety, but here are some key bits:

But does such direct-to-consumer (DTC) genotyping need to be regulated—or banned? Last month, Germany banned direct-to-consumer genetic testing. In 2007, the Genetics and Public Policy Institute found that 24 states limited or restricted direct-to-consumer genetic testing in some ways. Last year, both New York and California heightened their regulatory scrutiny of genotype scans such as those done by 23andMe, deCode, and Navigenics. The good news is the genotype scanning companies obtained licenses from California authorities, and so can now still offer their services to California residents. Several companies are still navigating through New York State’s regulatory maze. Last year, the American Medical Association adopted recommendations opposing direct-to-consumer genetic testing, stating that a health care professional should be involved with any genetic testing.

There may well be some inaccurate tests and there will certainly be people who mislead customers about the meaning of certain tests. But do we really need additional federal regulation to weed out bad actors? Most evidence suggests that the current tests are fairly accurate, and that customers are not being misled by the results that are reported. All new technologies involve a societal learning process in which some early adopters try it out, explain to others how it works, and find out its flaws—which newer innovators then fix.

In fact, the way the genetic testing industry will evolve is that the companies that tease out and explain useful information about disease risks and pharmaceutical interactions will be the ones to succeed. The bigger risk is that increased federal regulation will slow down beneficial genetic testing innovations….

One note: Bailey focuses on accuracy, but accuracy isn’t the whole issue. The other key issue is whether the tests actually tell consumers anything useful. Selling something just for its entertainment value is not ethically problematic — as long as consumers know what they’re getting.

(I’ve blogged about the ethics of marketing personal genomics, something that might be thought of as a not-very-useful product.)

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About Chris MacDonald

I'm a philosopher who teaches at Ryerson University's Ted Rogers School of Management in Toronto, Canada. Most of my scholarly research is on business ethics and healthcare ethics.
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