As dust settles in the wake of the Facebook and Cambridge Analytica scandal, people around the world are rapidly awakening to the power and value of their personal data. Information collected through social media about your favorite music or your choices on an online quiz contributes to an ever-growing mass of data about you that companies can monetize.
What some people seem to forget, however, is that your genetic data is valuable as well. So valuable, in fact, that pharmaceutical giant GlaxoSmithKline decided this summer to commit $300 million to the popular genetic home testing and ancestry service 23andMe as part of a drug development partnership.
Genes for Sale
Let me begin by saying that I am a 23andMe customer myself and am mostly satisfied with the service. Through 23andMe, I was able to easily send in a sample of my saliva to learn more about my heritage, discover that I will likely not develop lactose intolerance like my mother, and can now tease my brother for having more Neanderthal genes than me. Best of all, 23andMe breaks down their information in a way that my family, who are non-scientists, can easily understand.
In the past, 23andMe has used this cache of data for mostly benevolent purposes, contributing to over a hundred scientific studies. However, this new partnership with GlaxoSmithKline signals a shift in how our genetic data may be used in the future. Like all public companies, the primary goal of 23andMe is to make money for its stockholders. However, for pharmaceutical companies, the incentive is to make a drug that you have to buy for a lifetime. While 23andMe has been selling access to their data for years, they now are indirectly contributing to this larger issue by partnering with pharmaceutical companies. How long before 23andMe’s lifestyle surveys start to provide the data necessary for pharmaceutical companies to invent new symptoms to treat rather than researching answers to current problems?
As 23andMe and similar services have been exploding in popularity, so has the sharing and profiting off of the data they generate. As this data accumulates, it exposes customers, like me, to serious privacy risks. When 23andMe and other services provide “de-identified” data to outside research companies, they anonymize the data to follow rules set forth by HIPPA. In other words, your DNA is no longer labeled with your name—companies only obtain files labeled with basic demographic information, like location, gender, or age.
However, by its very nature, DNA isn’t “de-identifiable”. It is possible to trace de-identified genetic data back to its owner. A Harvard professor was recently able to accurately re-identify more than 40% of participants in a genetic study. Ancestry services’ questionable privacy made national headlines this spring when investigators were able to catch the Golden State Killer by searching for his family members using GEDmatch (a smaller service than 23andMe).
The good news is, thanks to the Genetic Information Nondiscrimination Act (GINA), it is illegal for employers and health insurance companies to discriminate against people due to their genetic information. However, GINA does have loopholes. Companies currently can skirt around GINA by requiring genetic tests for access to employee health programs. The law’s statute also doesn’t cover loans or life insurance.
Taken together, this raises concerns when it comes to our genetic data. For instance, investigators got lucky when they caught the Golden State Killer so quickly, but what happens when their search returns a false positive and they wrongly accuse someone of a crime they did not commit? What if you are running for public office, but your opponents are able to expose that you have an increased likelihood of developing early-onset Alzheimer’s?
As genetic data continues to accumulate, so will the need to protect it. How long until someone weaponizes our own genetic information against us like Cambridge Analytica did with people’s psychological profiles? While I don’t pretend to have all the answers, I do think there are some reasonable steps that can be taken to improve privacy as we navigate this new era of massive amounts of genetic information:
- First, 23andMe and services like it should put even more effort into explaining what they can legally do with your data. Customers may be consenting for their data to be used for research, but they should better understand the full extent of what this means. If these companies cannot police themselves in doing this, it may be wise for the government to step in and demand transparency.
- Second, GINA should be expanded at a federal level in a model similar to California. The time has come for us to demand policy designed to better reflect the sophistication of our own genome.
- Finally, testing companies should offer rebates to customers who agree to participate in research to more adequately reflect the value of the acquired genetic data.
At the end of the day, I am happy I purchased 23andMe’s service. However, I’m not convinced that the price was fair, considering how lucrative my genetic information actually is to them. Like myself, people around the world are rapidly realizing the power and value of their personal data–but perhaps this awakening is not occurring fast enough.