Imagine that sometime in your lifetime you could effortlessly and painlessly discover a big aspect of what makes you, well, you. Or maybe you wanted to keep things light and just find out if you have some Neanderthal in you. Fortunately for you, that day is growing near! 23andMe rolled out its newest Personal Genome Service (PGS), so now for just $199, you can receive personalized direct-to-consumer genetic testing for over “60 health, ancestry, wellness, and personal trait[s].” The best news however, is that 23andMe finally received a shiny new coat of Food and Drug Administration (FDA) approval for their Carrier Status Test after a two-year endeavor to meet their concerns with accuracy.
The process to get your personalized genotype is simple! You order a kit, spit into a test tube, and send it back. Within 6-8 weeks, you get an email from 23andMe with account and login details, and you are free to discover your deepest and darkest genetic secrets! You can test if you are a carrier for genetic disorders such as Cystic Fibrosis, Sickle Cell Anemia, or Tay-Sachs disease. Of course, 23andMe provides a fine print disclaimer that their tests “are not intended to diagnose a disease, or tell you anything about your risk for developing a disease in the future.” What it means to be a genetic carrier is that you have a recessive version of a gene or mutation of a gene that gives rise to a genetic disorder, but do not experience any symptoms. However, if you were to have babies with a similar genetic carrier, it could mean there would be a 25% chance your progeny would inherit two copies of the gene and develop the full-blown disorder. Finding out that you are a carrier could be vital information if you ever do plan on having children, as some of those disorders are potentially devastating and/or deadly.
Another interesting test is to view your ancestry. It is always funny when someone comes out a bit above average for Neanderthal genetics. You can see where your genetic ancestry comes from on a region-by-region breakdown which only figures to expand and become more precise as more users contribute their DNA to 23andMe’s database. Another exciting test report matches you with people all over the world that 23andMe deems genetically related, “from close family to distant relatives.” But the most fascinating test can trace your paternal and/or maternal line throughout history. Because mitochondrial DNA (mtDNA) is relatively stable (no change when inherited from mother to child) and abundant throughout the species, you can trace your ancestral line across generations to see which group of humans you came from and where they propagated and proliferated. This is the same mtDNA that many state forensics labs are using to identify people in court proceedings.
Now comes the worrisome part of this new personalized direct-to-consumer product, in order for all this testing to take place, you need to send 23andMe your DNA, and have them ship it out to labs to actually do the testing. While all personal identifying information to third parties is supposed to be confidential and anonymized, which might have its own issues with reliability, 23andMe is still not immune from the government (which can compel disclosure “pursuant to judicial or other government subpoenas, warrants, or orders, or in coordination with regulatory authorities”). In fact, according to a transparency report released the same day as their big announcement of PGS, 23andMe has already received four “User Date Requests” implicating five “Users/Accounts Specified” from the United States; they have yet to produce any data. 23andMe has a policy where they destroy the actual biological samples you provide them, unless you consent to bio-banking or “the laboratory’s legal and regulatory requirements require it to maintain physical samples.” However, the actual genetic data will be stored with them or their associated third parties for seemingly all of eternity, “as required by local law and we may retain backup copies for a limited period of time pursuant to our data protection policies.”
Even in not addressing the amount of havoc that could come by data breach from hackers, the genetic information stored by 23andMe could be playing a serious role in the legal realm very soon.
The government could hypothetically use the data to identify persons in court. They could also use the information within test reports as evidence, such as your “Toe Length Ratio,” or the fact that you metabolize alcohol at a faster rate than others. Outside of government use, those in the healthcare and pharmaceutical industry might be using your data to develop new drugs or target a new area of drug research. Most alarmingly though, could be the use of the ancestral information to make identifications. For instance, say that your brother is under suspicion for a crime that left a biological sample from which DNA was analyzed and the government cannot find a match in their database. However, they somehow learn that you are a 23andMe member and demand your personal genetic information. In that information is your mtDNA, something that is passed from your mother to all her children. Your test results might possibly be used to implicate your brother in those criminal investigations. Once again we are reminded that as technology grows, the law will continue to lag, but in addressing these issues and thinking outside the box on hypotheticals, we can at least spur debate.