I am the third of my name. The concept of heritage and genealogy were important aspects of my childhood. My last name is derived from the word armor-maker in French. The spelling and pronunciation changed with each new location and set of cultural influences my forefathers faced. We tell many stories within my family about our history and for the first time have the ability to add to, or in some cases disprove, the stories that shape my family’s self-conception.
Genetic testing solutions allow consumers to learn more about themselves and identify unknown relatives. The vendors that provide these tests, such as 23&Me or Ancestry promise to provide recipients with information about their health predisposition, their family tree, their physical traits, and their ancestry data. These promises present a compelling sales pitch to a person so enveloped by the stories passed down from generation to generation.
But I will not participate in genetic testing. At least not now. While learning about my past is important to me, it is the future that will prevent me from participating in any of the genetic testing services.
My genetic information is not just my own. If I am fortunate enough to have any children, they will inherit 50% of my DNA. My DNA belongs to them as well, and they cannot consent to having their genetic data shared with a 3rd party service. If there are consequences to my decision to receive genetic testing services, they would be powerless to combat them and likely just as vulnerable to those consequences as I am.
The United States has long realized the value of protecting an individuals personally-identifying health information. This information, covered as protected health information (PHI) is regulated under federal law (HIPAA) to prevent healthcare organizations from misusing or inappropriately distributing health data. Secure health information is critically important to a person’s safety, psychological and physical.
Let us consider a world without these protections. Imagine an elderly man who is suffering from a disease that may prove fatal previously had his health records distributed. Big Pharma buys those records and targets him with personalize adds that push unproven medication at high cost. Does that man have the presence of mind to consider those treatments rationally? Or does this predatory advertisement scheme, made possible by the release of health data, place this person facing his death in a psychological space that will result in overspending and potentially accepting treatment that lowers his quality of life. Consider a young gay consultant that travels internationally for work. Professionally, she keeps her sexuality private. Due to her medical records being sold, her clients based in a conservative country find out her sexual orientation and fire her.
These DNA test companies are not covered under HIPAA. The United States does not have a legal structure to suitably regulate what these companies do with their data. When these companies promise to provide reports on the recipients genetic indicators, physical traits, and medical predispositions, they are promising they have data that make the above scenarios possible.
The described scenarios are not only conspiracy fodder. DNA is not sufficiently protected and some of the privacy concerns have been proven valid. One of the DNA testing companies had a DNA breech in 2019 that revealed genetic and demographic data for 3,000 individuals. Law enforcement officers can require arrestees to take a DNA test without a warrant. In April 2018, US law enforcement legally used an online DNA match to catch a suspect, judges compelled the testing provider to open their database to a police search.
If US law enforcement’s use of DNA or a small leak are not sufficiently compelling, 60 Minutes ran an interview with Bill Evanina, the former director of the National Counterintelligence and Security Center, about China’s desire to collect American DNA data. I’ve added an excerpt below:
Current estimates are that 80% of American adults have had all of their personally identifiable information stolen by the Communist Party of China. The concern is that the Chinese regime is taking all that information about us – what we eat, how we live, when we exercise and sleep – and then combining it with our DNA data…
…Part of the social control includes the forced collection of DNA. Under the guise of free physicals for Uyghurs, Richardson says China is actually collecting DNA and other biometric data that’s then used specifically to identify people, target other family members and refine facial recognition software. And those, national security officials say, are just the uses we know about.
60 Minutes–CBS News
Currently, both Ancestory.com and 23andMe (the two biggest vendors in this space) claim strong privacy policies, and even allow users to delete some of their data (at the expense of future updates) that are designed to give their customers confidence that their data will be used responsibly and held securely.
That may be true.
But without a regulatory system that enforces genetic privacy, ensures total transparency on the transfer of genetic and demographic data and levies harsh punishment on data breeches, the risk of misuse is too high for me.
A final consideration. In 2018, U.K pharmacy giant GlaxoSmithKline invested $300 million in 23andMe, which included some exclusive access to 23andMe’s database. In December 2020, Blackstone Group, a global investment firm, bought Ancestry.com for $4.7 billion. In both cases users who purchased genetic tests prior to the investment/purchase now have their data managed or available to a corporation they may not trust as much as the company they purchased the test from. And given the sums invested, would it be rational to expect that these investors plan to maintain this store of priceless data without capitalizing on it?
Polly Wanna Math 