Last week the natural community was in an uproar over the announcement that 23andMe had signed a deal to the tune of $300 million dollars with one of our favorite companies, GlaxoSmithKline. As someone whose had their genetics tested through 23andMe (and is part of this community), I understand the valid feelings of betrayal.
You pay money to spit in a tube in return for your genetic data, not thinking that your sample or your data could be stored, used, or turned over for profit to the pharmaceutical companies who … let’s face it, probably played a role in why you got your genetics tested in the first place and have a long-standing history of profiting off of making sick people sicker. There’s something inherently personal about anyone having access to the most intimate pieces of yourself, and it doesn’t get more personal than your DNA.
To remedy this violation of the self, people are swearing off of 23andMe and genetic testing altogether. I’m certainly not going to stand in your way if this is what you choose to do, but I do want to empower you with the facts: 23andMe isn’t the only company doing this, there are ways to limit the use of your data, the benefits of genetic testing are irrefutable (or why would a drug company be signing on in the first place), the benefits of having a medication tailored to genetics could be beneficial to those who actually need them, and you’ve already given your data to literally every company you’ve ever ordered from, social media site you’ve ever used, page you’ve visited on the Internet, and lab that has ever collected your blood.
Yes, if you’ve had a baby, your placenta was shipped off and the data gathered from it was sold and used for research. If you’ve circumcised your son, his foreskin was sent to a cosmetic company somewhere to make creams for women allergic to wrinkles. If you’ve had an abortion, tissues, cells, and DNA were extracted in the name of drugs, vaccines, and food additives. If you’ve had your fingerprints tested, there’s a database out there that holds a copy of the report, and if you eat with a spoon at a restaurant, there is always a chance that your licked spoon could be hijacked. I could go on, but you get my point.
What’s important is that we know what we’re signing up for when we get a genetic test, how to protect information we don’t want shared, and how to work through whether the benefits are worth the risks.
Should You Get Your Genetics Tested?
A-b-s-o-l-u-t-e-l-y. Getting your genetics tested is relatively inexpensive, gives you loads of information that quite frankly, never expires, and is the future of both modern and natural medicine. Now, I’m not a fan of genetic testing for the purpose of deciding whether or not you should make pre-emptive life-altering/body-altering decision. Long story short, the study of genetics is relatively new and just because you have a gene that is associated with a condition doesn’t mean you’ll get it. (Anyone who takes an alternate approach has no understanding of epigenetics — how lifestyle influences gene expression — or the underlying causes of disease).
What a genetic test tells you is what genes you have that make you susceptible to certain health conditions, empowers you with the ability to make dietary and lifestyle alterations that influence the expression of those genes, and allows you to make decisions against certain procedures or medications (like vaccinations) that may increase the likelihood of harmful adverse reactions.
Do Genetic Testing Companies Keep and Share Your Sample/Data?
There are a ton of places you can go through to get your genetics tested: 23andme, Ancestry.com, Family Tree DNA, My Heritage, and Living DNA, are just a few. (You can also get a test through your doctor but it won’t give you as much information and is insanely expensive.) Most of these tests use saliva samples or cheek swabs and then generate results based on those samples. To your surprise, all of these companies store and use your samples and results. For example, Ancestry, Living DNA, My Heritage, and Family Tree DNA may store your samples indefinitely; 23andMe stores your sample for 1-10 years; and any company you use can change their policy at any time.
Out of the above list, 23andMe is the most popular because it is well-known for its genetic health screening and is in the hot seat because they recently sold-out to an infamous drug giant. But let’s be clear, we can assume that any other company will follow suit.
Why Pharmaceutical Companies Want Your Data
Pharmaceutical companies want the information that 23andMe and other companies have compiled so that they can produce more drugs and produce more money. That’s really what it’s about. This isn’t necessarily a bad thing because some people actually do need medications and having a treatment that is more tailored to genetics could offer more viable treatments for people in life-threatening situations that are past the point of taking an herb. On the other hand, big pharma is notorious for crossing ethical boundaries, manipulating data and consumers, and well … killing people. This also opens up the door for data to be sold for the purposes of discrimination or ad targeting.
Personally, although a pharmaceutical company may have my data, which essentially includes whatever genes make up my existence under whatever name I chose to associate with my sample … that information doesn’t allow them to do anything to my body. If they’ve read my report, I wouldn’t even know it and quite frankly, I couldn’t care less if they know what my MTHFR, COMT, or CY1AP2 status is. To me, the benefits of knowing MY genetic information has allowed ME to tailor MY own personal health regimen and bypass pharmaceutical drugs for the supposedly incurable diseases I have altogether.
What 23andMe Stores and How They Use Your Information
According to their website, 23andMe shares your genetic and self-reported data with third parties (like non-profit corporations, academic institutions, pharmaceutical companies, and diagnostic companies). This includes, your age and ethnicity, information you enter into surveys, forms, and other features, and data you authorize them to import. Don’t worry though, 23andMe takes “great care” in making sure your data is transferred safely to the pharmaceutical company you wouldn’t want to have your information in the first place.
In the event of such a breach, if some or part of your genetic or self-reported data is associated with your identity in a public database, someone could match your name with your genetic or self-reported data. This could impact you directly. For example, these data may be made public or released to insurance companies, which could have a negative effect on your ability to obtain insurance coverage.
You’re probably freaking out right now. I get it. You don’t want anyone storing your samples, selling your data, or doing anything else with your DNA. At the same time, you want the information about your DNA that could revolutionize the way you eat, supplements you take, and how you live your life. Your only options then are to forgo genetic testing altogether, protect your data, or get your results and run.
How to Get Your Genetics Tested While Protecting Your Data
Here’s how to get your genetics tested while preserving as much of your data and privacy as you possibly can. First, regardless of the company you use, read what you agree to carefully when you’re signing up so that you can opt out of anything you’re not comfortable sharing. This includes account information, storage of samples, and your genetic data.
If you already have an account with 23andMe (like myself), log in to your account settings and go to the privacy / sharing section to see which apps are connected to your account, who you’re sharing information with, and what programs you’re participating in.
Next, go to your preferences to make sure you have revoked your consent or declined to be a part of the research program and individual data sharing. From here, you can also select the option that states you do not authorize them to store your sample. (This is exactly what my preferences look like.)
Although I didn’t do it, I know of many people who chose to have their genetics tested under an alternative name so that their sample wasn’t associated with their information. If you’re still concerned though, you can download your raw data file (which is sent to your dashboard after your sample is analyzed) and delete your account entirely.
There are NO Guarantees
Even if you follow all of the steps above, there are really no guarantees that your information will not be shared. So, it really comes down to whether you think the benefits of knowing your DNA outweighs the risks of the report being potentially used by third parties to create services, drugs, or other products. I would suggest though, that if you’re really concerned about 23andMe, you look at all of the social media sites who are using your data (facial recognition anyone?), the companies you use your debit card with, the apps you authorize, the insurance company you work with, and the labs you have your medical tests done through … because your information is being used by everyone everywhere.