In the last decade or so, home DNA testing kits like 23andMe have increased exponentially in popularity. Consumers purchase a kit for roughly $100, put a saliva sample in a tube and send the tube to a lab for analysis. Later, customers can view their report online, which includes information about ethnic background as well as medical information, if they purchased the more expensive kit.
For many people, it’s exciting to know more about where they came from. It also sounds like a good idea to know more about what conditions you may have later in life based on your genes, so you can take a preventative approach. Some people have used these kits to help them find their birth families and meet them.
In April, police caught the infamous Golden State Killer after 40 years using DNA samples from the crime scene and matching his DNA with a distant relative who was in a database after doing a home DNA test. However, these tests can also have some downsides.
23andMe can keep the raw DNA data of test-takers, even if they opt out of the company keeping their saliva sample.
The website says, “By choosing to have 23andMe store either your saliva sample or DNA extracted from your saliva, you are giving 23andMe and its contractors access to analyze your stored sample, using the same or more advanced technologies.” Aside from violating privacy, this has other potential problems. In August, 23andMe signed a $300 million deal with the pharmaceutical company GlaxoSmithKline, for the purpose of helping them develop new prescription drugs.
They also have partnerships with four other pharmaceutical companies, Alnylam Pharmaceuticals, Biogen, Pfizer and Genentech. These partnerships are unethical for several reasons.
It’s very unclear to the consumer that the company will still retain DNA even after saliva samples are disposed of. While you are giving them consent to your genetic data, it still isn’t right for them to find loopholes to hang onto it when it sounds like they aren’t keeping it.
I believe this has the potential to exploit people’s genomes for profit. We live in a country where life-saving drugs are price gouged, where the ill and disabled struggle to live while the one percent thicken their wallets. Selling people’s genetic data with pharmaceutical companies is a slippery slope.
While they may have good intentions in developing new treatments, this information could potentially be used to discriminate. If health insurance companies have access to genetic data, they could use it to pick and choose who they want to cover based on how likely it is for certain people to develop medical conditions.
AncestryDNA, a similar company, had a partnership with Calico, a for-profit biotech company, which ended last August.
AncestryDNA also has partnerships with non-profit researchers like a group at the University of Utah and the American Society of Human Genetics.
AncestryDNA has options for consumers to delete all data within 30 days after a request. However, you must contact the company over the phone and ask them to dispose of your saliva sample.
DNA testing companies need stricter regulations and clearer informed consent policies, and they should not be allowed to sell data.
They also shouldn’t be able to collaborate with any for-profit groups. When money is involved, some people will stop at nothing to get it, even if it means discriminating against someone or exploiting them.
I urge anyone interested in using one of these kits to proceed with caution and make sure to read all of the fine print when filling out the paperwork and creating an account.
Additionally, I would suggest having your data deleted. Remember, even though these companies say your data is private, so did Google and Facebook in the beginning.