Executive Director of Crime Stoppers of Houston
Sunday Mornings with Rania: DNA Testing - What to Consider
Raise your hand if you've done one of those DNA tests...! It's been the latest craze as we all want to know exactly where we're really from. While my hubby and I haven't taken one yet, we do have two kits waiting for us to swab, send and return with informational DNA clarity.
Just this week, we found out that police used genetic database GEDMatch to track the Golden State Killer suspect. Investigators tracked him down based on genetic information provided by one of his relatives.
Truth is, genome testing is interesting with companies like Ancestry and 23andMe offering the general population a chance to "scientifically" determine one's genetic makeup and family history and predisposition to diseases. It's fascinating and friends who have taken it have glowingly shared remarkable findings. "This whole time, I thought I was Irish, turns out, I'm 53 percent Sicilian!"
But like with anything, we need to stop and consider the ramifications of what we're providing these companies. It's not just a swab, it's our actual DNA. And with that, privacy experts are ringing an alarming bell asking questions like What information is extracted exactly? Where is it kept? And for how long? How is it kept and what can these companies do with it afterwards? These questions should give us all pause.
Here's what you need to know:
- Health or Life Insurance Denials in the Future? If you have had DNA testing and determined you have a preexisting condition or uncovered some type of implications regarding your health and you are asked about that, you are legally obligated to share what you know. Failing to do so would be akin to making false claims on a contract and legally detrimental. It follows then that information collected and known to you could later be used to deny you or your family access to health and life insurance.
- Legal Issues? There are anti-discrimination laws currently in place that limit what your health insurer or employer can learn about your DNA. The caveat is that those laws don't apply to life insurance, disability or long-term care insurance companies.
- Privacy Issues? Before you take any of the various DNA tests, read and understand the privacy policies. That said, remember that companies have the right to change their policies at any time. While you technically have to "agree" to any changes, it is questionable what your options are should you not agree to the changes.
- Monetizing your specimen? For now, these companies are making a great deal of money off of people submitting samples to gain DNA information. That said, at the first sign of those sales plateauing, companies will seek additional revenue streams. With access to so much information, one has to wonder if they could or rather, would, monetize either the actual specimens or the actual genetic information? Beyond that, if the company goes bankrupt or is sold, its dispersed assets could include your genetic information.
- Crime Scenes: Law enforcement has been using DNA at crime scenes for years now. But do they have access to our DNA that was collected in a non-criminal manner, for legal issues? A recent 23andMe "transparency report" revealed that law enforcement made five requests to the company for an "individual's genetic information." They declined the request. The 2017 Ancestry "transparency report" revealed that they did, in fact, turn over information to law enforcement in 8 out of 9 requests. And it's not just your DNA that might be of interest. In 2005, police confirmed the BTK killer was their suspect by subpoenaing his daughter's DNA from a local hospital.
So now what? It's important to realize that not only is the information you are sharing and finding out critical to your future but it also opens the door on information pertaining to you, your siblings, your parents, your cousins and your children. Until law makers have fully caught up to the science, are you okay with sharing this level of information or simply "having it out there"? Yes, these companies claim that protecting your privacy is their highest priority but so do credit card merchants and they have been guilty of selling information or being subject to a data breach more times than I can recall.
With all this in mind, I'm thinking our two DNA testing kits might just stay in those boxes for a little while longer.
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