Genes for Rent: How One Company Plans to Profit From Your DNA

A few months ago, my monthly “Better Health Care” newsletter focused on genetic testing. While we all can appreciate the idea that knowing your own DNA can (eventually) lead to health advances, I also discussed how this abundance of genetic information can cause not only unnecessary expense and worry, but can yield painful knowledge for which there is no treatment or cure.

One of the companies mentioned in the newsletter that offers direct-to-consumer genetic testing, 23andMe, is the subject of a recent post on HealthNewsReview.org, a site devoted to the dissemination of accurate information about medicine and health care. A post by Alan Cassels, a drug policy researcher and founder of Media Doctor Canada, another organization devoted to science-based health news, grappled with the fact that, in an effort to “land in the black,” 23and Me is raising venture capital from the pharmaceutical and biotech industries by selling the DNA information it has gathered from the public.

According to Cassels, more than 150,000 people have paid $100 to have their saliva analyzed for genome sequencing.

So after capturing $15 million in revenue, the company hasn’t made a profit? As Cassels succinctly wonders, “What gives?”

“Surely providing personal genetic profiles (so people can learn deep dark secrets of their ancestral past or their lifetime likelihood of developing Type 2 diabetes), is worth a lot? Apparently not,” Cassels writes, “but it will be after the DNA in all that spit is repackaged and held up as bait to the drug companies.”

Cassels’ point is that the value of someone’s-or hundreds of thousands of someones-genetic information isn’t worth much until it’s monetized and generates profit.

As we all know, Big Pharma loves profit. Loves it more than integrity, loves it more than patient safety. By marrying 23andMe’s huge database with Big Pharma’s research and marketing resources, 23andMe will be able, as the company says, to “empower people to take control of their health destinies rather than becoming slaves to the health-care system.”

Cassels, and anyone looking objectively at this situation, questions whether people will be released from servitude or will only be switching masters. Monetizing “all that spit they’ve collected,” Cassels says, is just another way of saying 23andMe will mine the data for even the tiniest of nuggets so it can patent new products to sell back to people encouraged to be concerned about genetic traits that, left unrecognized, might never require medical attention.

In May, Cassels notes, 23andMe got a patent for the discovery of a gene that might protect someone from getting Parkinson’s disease. It would be impossible to understate the worth of something of that magnitude. So, with that as a target to develop a drug, 23andMe pretty much would corner the market on both the test and the drug.

Don’t be fooled-what the company claims as consumers’ rights to know their full medical profiles and control the health-care costs to address them is just a business growth plan. It’s about, as Cassels puts it, “cold hard cash.”

Genetic testing can be a valuable and useful tool for diagnosing and treating medical conditions. But as we said in the newsletter, it’s also a minefield for miscommunication, overtesting, over treatment and emotional turmoil.