Who knew something as simple as some spit would change the technological landscape in 2018. Yet that is precisely what companies like 23andMe, which launched its DNA testing service in 2006, have been banking on. Over 12 million people have sent their spit off to testing companies like Ancestry.com, 23andMe, MyHeritage, FamilyTreeDNA, and the other 40-plus DNA testing companies. It seems the Age of Genomics is here. Whether it’s a utopian Golden Age of the future or a dystopian Dark Age remains to be seen.
The proof is in the saliva
The steps are simple: order a kit from a DNA testing company, use the spit kit to collect your saliva, send the barcoded tube back to the company in its pre-paid package, and then discover – who you are, where you come from, and, perhaps, who you’re meant to be. For $199 – the current price for the recommended kit from 23andMe – consumers get ancestry reports and genetic health risk reports. It’s an enticing prospect.
But DNA testing companies aren’t making their profits off the kits they sell to consumers. Instead, they are collecting millions of DNA samples that include personal health information (PHI) and turning around to sell it to research and pharmaceutical companies.
“The companies offering these tests largely make their money not from doing the tests, but from selling the genetic information to other companies interested in having access to large genetic databases,” says Professor Sheldon Krimsky of Tufts University.
23andMe stands to make $300 million on its recent deal giving exclusive access to its DNA database to GlaxoSmithKline (GSK), a massive biopharmaceutical company in the UK.
For many consumers, this came as an unpleasant surprise. What at first appeared to be a fun and scientific way to learn more about yourself – at one time 23andMe’s website stated their goal was to bring “you personal insight into ancestry, genealogy, and inherited traits,” – quickly evolved into health risk profiles, drawing rebuke from the FDA in 2013. (The FDA has since withdrawn its complaint, and 23andMe now sells genetic health risk kits). The real risk that even the FDA is missing isn’t with your DNA being misused to give poor medical advice, it’s collecting your data to create a profitable database that it can then sell.
As Charles Seife pointed out in his Scientific American article “23andMe Is Terrifying, But Not For The Reasons The FDA Thinks” back in 2013, “The Personal Genome Service isn’t primarily intended to be a medical device. It is a mechanism meant to be a front end for a massive information-gathering operation against an unwitting public.” Seife goes on to use the example of Google; your local friendly search-engine that became the largest indexed database of information in the world, raking in $10 billion annually by providing your personal preferences to advertisers and corporations.
Turns out, the data lurking in your DNA is more valuable than you thought. But to whom? The contenders: consumers, DNA testing companies, and the community. 23andMe argues the latter; your DNA benefits the community by helping find cures faster. In the 23andMe and GSK deal announcement, 23andMe’s CEO Anne Wojcicki said, “By working with GSK, we believe we will accelerate the development of breakthroughs.”
Today, 23andMe’s core values state, “We are a mission-driven company with big dreams of using data to revolutionize health, wellness and research. We want to improve healthcare. We want to prevent disease. We want to give individuals control over their health data. We want to dramatically accelerate the pace of research. We want to develop better drugs smarter and faster.”
That’s all well and good; however, when these drugs do finally come to market, the question remains whether consumers – the same people who donated their DNA to “science” – will see the price of drugs drop in return for their contributions.
Does PHI protection even matter?
“Privacy is a value so complex, so entangled in competing and contradictory dimensions, so engorged with various and distinct meanings, that I sometimes despair whether it can be usefully addressed at all,” writes Robert Post, a leading legal scholar, in the Georgetown Law Journal in 2001.
On the other hand, when this question was posed to a colleague, he answered, “Meh. My data’s already out there. Who cares.”
Aye, there’s the rub. Privacy is complex, and with less and less of it in our daily lives, perhaps we no longer see its value. But your PHI is valuable – and not just to the vaults of genetic testing companies. Illegal entities value the immutable nature of your medical records. Unlike your credit card, which can be cancelled and replaced, or even your social security number, which – though it will be a hassle – can be newly administered, the PHI in your medical record can’t be replaced. A medical record on the darknet – the non-indexed collection of markets where hackers, criminals, and privacy advocates linger – sells for between 10 to 50 times as much as a credit card number.