Police and pharma companies want to get in your genes
Home genetics tests are doing a lot more than untangling family histories – they are being used to investigate crimes and create pharmaceuticals – often without the awareness of the people submitting the DNA samples.
Genetics tests began as a novelty, enabling people to find quirks in their genetic makeup which might or might not go along with the established family tree. Easy, affordable, and interesting; these DNA testing options have become mainstream. There are around 50 companies providing such services — and a few market leaders are already at the front of the line.
Caught in his genes
The novelty aspect of genetic testing ended with the capture of the Golden State Killer in 2018. A serial killer, rapist, and burglar, this individual was believed to have committed at least 13 murders, 50 rapes, and a raft of other property crimes from 1974 to 1986 – then he vanished. He was captured with the help of Barbara Rae-Venter – a genetics sleuth – and the GEDMatch genealogy website.
More than bringing this set of crimes to a close, the success of this hunt has also raised the profile of genetics-powered investigations. While there are no questions over whether the crimes were heinous, there are many questions about the way this pool of genetics data has been accumulated and the way it can be used by both police and private companies.
Sure, the police can/can’t get that data
The attention over police access has led genetics companies to do some interesting flip-flops. FamilyTreeDNA has been criticized for giving the FBI easy access to its database of more than one million users. They now say that users can disable the “matching” option to keep their data more private. Two other testing companies say they want to see a subpoena from the police before handing over the data. It is said that the FBI already have enough data, that they can reportedly get a second cousin connection for every criminal on the hoof.
These quick-changing company policies highlight the lack of privacy guarantees with DNA testing. Not only are some of these policy shifts with the police being announced by press releases – which customers are not likely to read – users also likely skipped over some of the details already written out in the general product description. This situation is just like the terms and conditions in most apps — largely ignored by users. In addition, it’s often not clear what ability firms have to use or resell this data for other purposes.
It’s not just police access that is worrying people. Ancestry.com and 23andMe — two of the largest testing companies – already share anonymized genetic data with outside researchers. Ancestry has worked with a Google spin-off to investigate human longevity. 23andMe is working on drug-development on its own and with GlaxoSmithKline. Kathy Hibbs, 23andMe’s chief legal and regulatory officer, thinks people should relax and not worry about fears of losing their individual privacy. “It’s not individual data that’s interesting for research — it’s the ability to look at large groups of people to see what’s unique. It’s the aggregate data, not individual data, that’s meaningful,” she stated.
Data is the new oil
It’s been said that data is the new oil – a huge resource and moneymaker for those that extract and process it. DNA testing is just one new expression of this potential.While the DNA testing specifics do vary, overall the tactics are similar to the data collection tactics used by major technology companies. As succinctly stated by Elizabeth Joh, law professor at University of California, Davis in the MIT Technology Review: “First rule of data: once you hand it over, you lose control of it. You have no idea how the terms of service will change for your ‘recreational’ DNA sample.”