Genetic Testing’s Safety, My Response.
Recently there has been a lot of talk about the security and privacy of genetic testing. Many of us like to see our genetics and it can be very valuable when working with a genetically savvy health practitioner. Just poke around my website and you’ll see all kinds of information on genetics and how it can be applied to healthcare. It’s truly one pillar of the future of healthcare and I feel you deserve to have the right to view your own genetics without it being sold or available for other 3rd parties.
As you have probably seen, Ancestry.com changed their waiver for DNA testing to waive your rights to your own DNA. You as well sign that you agree that your DNA may be used against you or your relatives. As well you agree that they can use your DNA worldwide over and over, without any royalties or your permission. This doesn’t set well with me! This means even your relatives could pay the price for your DNA falling into the wrong hands and you have no legal rights in the situation.
As well I’ve been in the genetic testing world for around 6 years as of writing this and I’ve seen and heard many things that do not set well with me as well. I had a lab rep once told me that almost all genetic companies sell the DNA to drug companies or other 3rd parties. And this was a VERY repeatable lab. One other industry secret is almost all genetic “labs” are just contracting through another lab. I wonder what the other lab’s policy is on handling genetic data?
Now, yes, you can run your labs under a fake name with a prepaid card so there is very little connecting your name to the results, but the DNA can still be sold to 3rd parties and potentially matched to other relatives. There is a chance with enough samples they may one day be able to pinpoint you. This is concerning to me and I no longer recommend using sites like 23andme or ancestry. It is hard to beat the price point with all the genes they do check, but many of them are pointless when it comes to a healthcare setting. Sure, finding ancestors is fun and all but is it worth it? Just call your relatives. I will say it is interesting who matched genetically close to me who live very close to where my grandfather lived… I heard he was a little promiscuous, ha. And yes, admittedly I have done some genetic testing back 6 years ago when I first got into this. I wouldn’t do it over.
So what is there to do now?
I recently have teamed up with a very small private lab who is letting me run my own panels under my own rules. Now, I firmly believe we have a right to view our DNA in a safe manner and without it being sold to someone else. Therefore my terms are to destroy the DNA sample after testing and they have agreed. In fact, they beat me to the punch when suggesting it. I was incredibly happy and extremely excited! So as of now, we have one panel available and another coming very soon.
The first panel is a Lifestyle & Diet Genetic Panel. Its main focus is on actionable changes you can make in diet and lifestyle to help improve your health. You get a written report from our Ph.D. geneticist and an SNP panel with your mutations. The price is comparable to these other companies who offset the cost of testing by selling the DNA. We offset the cost by staying small and with a low marketing budget, so if you’re happy with our products tell your friends! This panel does include popular genetic SNPs like MTHFR, BCMO, and FUT2 along with much more. You will get diet recommendations, gluten/lactose sensitivities, possible vitamins you may have issues with and much more. All with the security of knowing your DNA will be destroyed. In fact, right now, your sample is just a number. All we need is an email to send the report back based on your test kit number. Slick, right? I think so at least. Oh and it’s a cheek swab and not a vial you have to spit in for 4 hours to get a large enough sample. That means it’s kid friendly!
The upcoming test is aimed more for practitioners and includes every mutation most mainstream practitioners and myself like to look at for our patients. The exact list isn’t completed yet but will include: MTHFR, MTR, MTRR, COMT, VDR-BSM/TAQ/FOK, DAO, SUOX, AHCY, MAT, CBS, MTHFD1, MAO-A, COMT, and much more. I’ve compiled over 160 mutations and plan to have the most comprehensive, affordable, safe and private test on the market. Our team is aggressively updating our data and mutations constantly so we will be on the bleeding edge of testing and interpretation. There will be discounts for people who purchase the first test and there are mutations on the first test that are not included on the second.
I’m extremely excited about what’s to come! Feel free to message me things you would like to see changed or recommendations for us, we are here to keep you happy while keeping your privacy safe.