By submitting your genetic material to a company, you're tacitly agreeing to share your identity and rights to your most private information.
From "fear of missing out" on social media to belligerent political differences, modern existence is increasingly alienating. As a result, more people are interested in "finding their tribe" by digging up their family origins. But genetics-testing companies like Ancestry and 23andMe take more than your DNA, they take your privacy to that information, as well. With the Golden State Killer finally arrested thanks to data mined from those genetic databases, law enforcement has proven their ability to access the company's records.
In the same vein, the government can gain access to personal information given to these sites for purposes they deem justified. For example, in 2019, Canadian immigration officials obtained DNA results from sites like Familytreedna.com and Ancestry.com in order to identify immigrants' nationality and trace their relatives. Subodh Bharati, a lawyer representing one targeted individual, told Vice, "I think it is a matter of public interest that border service agencies like the CBSA are able to obtain access to DNA results...There are clear privacy concerns. How is the CBSA able to access this information and what measures are being put in place to ensure this information remains confidential?"
While each site in question denies working with government agencies, if authorities argue that national security is at risk, then the websites "can't really say no," as immigration lawyer Jared Will explains. He condemns the exchange as "extorted consent." Bharati warns potential customers, "Individuals using these sites to look at their family tree should be aware that their confidential information is being made available to the government and that border agents may contact them to help facilitate the deportation of migrants."
Furthermore, accessing your data doesn't always a take government measures. For instance, according to 23andMe's policy, "We do not share customer data with any public databases. We will not provide any person's data (genetic or non-genetic) to an insurance company or employer. We will not provide information to law enforcement or regulatory authorities unless required by law to comply with a valid court order, subpoena, or search warrant for genetic or Personal Information." Yet, there's an additional permission users are asked to agree to, reading, "By agreeing to the Research Consent Document, Individual Data Sharing Consent Document, or participating in a 23andMe Research Community, you can give consent for the use of your data for scientific research purposes."
In July 2018, 23andMe announced it was partnering with the world's ninth-largest pharmaceutical company, GlaxoSmithKline (GSK). The agreement grants GSK exclusive access to the genetic information of over 5 million users, and 23andMe received $300 million. GSK released a statement explaining their interest in genetic databases, saying, "The goal of the collaboration is to gather insights and discover novel drug targets driving disease progression and develop therapies."
While it's a universal good to create more effective and closely targeted medicine, the transactional exchange of people's most private information, their DNA, unsettles many. Peter Pitts, president of the Center of Medicine in the Public Interest, told NBC, "Are they going to offer rebates to people who opt in, so their customers aren't paying for the privilege of 23andMe working with a for-profit company in a for-profit research project?" In essence, people are paying the site to make money off their information, with no recompense.
Additionally, despite what's written in the company's policy, "the problem with a lot of these privacy policies and Terms of Service is that no one really reads them," says Tiffany C. Li, a privacy expert and resident fellow at Yale Law School's Information Society Project. While users can opt to close their 23andMe accounts or retract their permission once it's given, the company emphasizes, "Any research involving your data that has already been performed or published prior to our receipt of your request will not be reversed, undone, or withdrawn."
Lastly, there's the possibility of information leaks. In June 2016, the DNA testing service MyHeritage announced that its database of 92 million accounts had been hacked. The depth of the breach only revealed encrypted emails and passwords, but the company was targeted because the premium on genetic data is far more valuable than credit card or bank information. Hackers could hold DNA data for ransom, according to Giovanni Vigna, co-founder of the cyber security company Lastline. He says, "This data could be sold on the down-low or monetized to insurance companies. You can imagine the consequences: One day, I might apply for a long-term loan and get rejected because deep in the corporate system, there is data that I am very likely to get Alzheimer's and die before I would repay the loan."
Ultimately, by submitting your genetic material to a company, you're tacitly agreeing to share your identity and rights to your most private information. .As Natalie Ram, law professor in bioethics, says, "If there is data that exists, there is a way for it to be exploited.
Is biohacking as scary as it's been made out to be?
Keoni Gandall, an 18-year-old research fellow at Stanford, has eschewed video games and team sports in favor of using advanced lab equipment to perform DIY gene editing. Using the widely available CRISPR/Cas9, Gandall wants to clone DNA and eventually make full genomes at home. The availability of this technology represents a new democratization of science, a science that can be performed anywhere by anyone relatively cheaply. That said, there's always a price associated with this type of freedom.