Personal data, and what businesses do with it, is a hot topic these days. We all hand over personal data regularly, and once we’ve done so we don’t have a lot of control over what happens to it. That can be pretty scary when it’s your name and phone number on a website – so how worrying is it if it’s your actual genetic data? Recently, DNA testing company 23andMe was exposed as having sold data from its customers to a variety of drug companies. Is this a truly terrifying violation of our privacy?
- 23andMe, founded in 2007, is a personal genetic testing company that’s best known for selling a $99 DNA test kit. Send them a sample of your saliva and they’ll provide an analysis of thousands of your genetic quirks – for example, whether or not you can smell asparagus in your urine.
- The company has positioned its tests as a fun way to learn about genetics – but it’s also a massive database of human genomes, and for drug and biotech companies that’s a goldmine of information.
- What 23andMe does with its customers’ data came under the spotlight last Wednesday, when GlaxoSmithKline paid $300 million for a stake in the company. The British pharma giant now has access to all 23andMe’s genetic data – and they’re not the only ones.
- It turns out that 23and Me has been selling data for a while. “We have a lot of research partnerships,” a company officer said. “Some of these include financial remuneration.” In other words, they’re taking money and handing over genetic data.
- Privacy advocates are very concerned about this. The worry is that drug companies could use the information to target advertising at people who, according to their genes, are more likely to need certain drugs. Health insurers could even adjust premiums based on DNA data – if you have certain genes that make you more likely to contract a disease, they could bump up your bills.
- Luckily, 23andMe hasn’t actually been selling personal information. Instead, they’ve been stripping out names, then supplying companies with anonymized genetic data. Drug manufacturers can use the information to study the frequency of gene variants and how they link to health problems – which helps them develop new drugs – but they can’t use it for marketing.
- Companies like 23andMe usually keep genetic data for at least ten years. It’s possible to opt out from having your DNA stored at all if you’re worried about how it will be used – but the rules are unclear, and while they won’t physically store your DNA if you opt out, they may keep your genetic sequence.
So yes, 23and Me are selling data – but not quite in the way privacy advocates are worried about. Even so, if you get a DNA test done, there’s a good chance your genes will end up in the hands of a drug company even if you tick all the privacy boxes.