We highly recommend reading this entire article about DNA privacy before you choose a DNA testing company. In this article, we tell you exactly how we got our genetic testing done without giving away our personal information.
But, if you already know all about how to protect yourself, or don’t care about your DNA privacy, feel free to jump right to our best recommendations for DNA testing companies that are best for HEALTH, (rather than ancestry, people-finding, etc.) by clicking the button below:
DNA Testing – Why is it important?
A genetic test that focuses on health genes can tell you your likelihood of getting certain diseases. This information can be very useful, as you can take steps to do extra preventative lifestyle habits and get regular testing to make sure that you are not developing the condition.
Genetic/DNA/SNP testing can tell you things about your body that can save your life. It can tell you that you are allergic to certain drugs. I, for example, am allergic to 2 types of antibiotics. Taking them could kill me, so I made the decision to get a medical ID bracelet which I wear whenever I go out, in case I am unconscious and unable to tell medical personnel about my allergies.
Genetic testing can also tell you about vitamins that your body is unable to synthesize or process on its own without supplementation. So taking the right supplements can keep you from getting certain diseases.
For example, a large percentage of the world’s population has a defect in the MTHFR gene. In some ethnicities, the chance to have at least one MTHFR variant is as high as 50%.
The MTHFR defect affects the metabolism (body’s use of) folic acid, also called vitamin B-9, which is vital to the body. There are over 60 diseases and illness conditions associated with MTHFR defects, and Folic acid is very important and is used:
- by cells that multiply quickly (nails, hair, skin) every single day,
- to create red blood cells of the proper size and shape,
- in the Methylation detoxification pathways of the liver to remove toxins, and
- during pregnancy, an MTHFR defect in the mother can increase the risk of miscarriages, pre-eclampsia, or birth defects such as spina bifida & cleft palate.
But, taking a specific active format of the B Vitamin Folic Acid, called Methylfolate, daily, can easily solve this common DNA defect!
And, as we have outlined in our book, Detox for Everybody, genetic tests can also be invaluable in telling you if you have the MTHFR defect, or any other any Detox pathways that are not working so that you can compensate and support that pathway.
How is genetic testing done?
Usually done by testing saliva or swabbing the inside of the cheek, genetic tests can also be performed on a sample of blood, hair, skin, amniotic fluid (the fluid that surrounds a fetus during pregnancy), or other tissue. At-home kits that are mailed in have become quite common and there are now many many companies offering at-home testing, but be forewarned, not all companies are the same!
How can you protect your DNA data?
It is a good idea to protect your DNA data. Most genetic testing companies sell your DNA data to third parties, and/or share anonymized genetic data with researchers, pharmaceutical companies, and the authorities, voluntarily or if they are required to do so by law.
Some companies do not even separate your identity information from your DNA data, and even if a company does take steps to make your DNA data anonymous, they might not be able to stop a hacker from breaching their security. And, at this point, if the company allows you to download your own genetic data, none of the platforms encrypt that file transfer from the time it is sent to the time it is received. And if a person’s login information is the same as their email, there is another potential failure point.
“It may be getting easier to link your private and anonymized DNA data to your identity. That means the genetic data you share with a testing company — which may include sensitive health information like your risk of cancer — could one day be matched with your name by an unintended party… Whether it’s a political figure claiming indigenous heritage or a CEO with a genetic risk for mental illness, any one of these factors could be used against someone if they got into the wrong hands.” [Source: “After you spit in a tube…” Business Insider] A more common situation might be that your DNA data could affect your life, health, or disability insurance premiums or your ability to get insurance at all.
“In an internal memo, (co-signed by the US Defense Department’s top intelligence official,) the Pentagon leadership has urged military personnel not to take mail-in DNA tests, warning that they create security risks, are unreliable and could negatively affect service members’ careers.” [Source: NY Times, Dec. 2019]
You can choose to agree to have your data shared for research purposes, or not, that is your call. Obviously not sharing it is safer, but sharing it may help scientists to cure a disease, or help you find relatives if that is what you are after.
“Legal policies that govern the private use of consumer data are still being developed… According to Dr. James Hazel, a postdoctoral fellow at the Center for Genetic Privacy and Identity, there are fewer protections for your data with consumer DNA testing kits than there would be if you were taking a medical test. If a doctor takes a DNA sample, that sample is protected by the Health Insurance Portability and Accountability Act and there are limits on how it can be shared.” [Source: NY Times]
So how can I get my DNA test without giving away my data?
There are ways to protect yourself and still get your DNA data. Here is how we did it:
You should always choose a company that allows you to request that your DNA sample is destroyed, and your DNA data, as well as your account data, are deleted.
We personally bought the kits by mailing the company a money order and having them ship the kits to a mail service, like a UPS or FedEx store. (You must make arrangements with where you are going to have the kit delivered beforehand, obviously.)
Then, when we filled out the test forms, we were careful not to give them any personal information, by using arbitrary initials instead of our real names, a fake date of birth, and an email address not connected with us or our business.
Another sneaky way you might want to go is to buy many DNA kits and give them away as gifts to a variety of people, (telling them of course, all the steps they need to do to keep their data safe.) This will further obscure each individual’s information, especially if the individuals are not all your family members.
Are there laws to protect my DNA data?
Some companies are attempting to protect user’s privacy. In 2018, 23andMe, Ancestry, Helix, MyHeritage, Habit, African Ancestry, and Living DNA joined up with the non-profit ‘The Future of Privacy Forum’ to determine best practices for genetic testing services. “The companies agreed to promote transparency, while also giving consumers control over how their data is collected, accessed, corrected, used in research, and deleted.” In July, 2019, Ancestry, 23andMe and Helix formed ‘The Coalition For Genetic Data Protection’ to lobby “for reasonable and uniform privacy regulation that will (attempt to) ensure the responsible and ethical handling of every person’s genetic data.” [Source: USA Today]
But as you probably noted from reading the above, none of that is law. Some legal residents are being formed as new cases go to court, but there is no federal law, as of this writing.
Read the fine print
To be safe, you may not want to agree to certain options that are presented to you when you sign up for testing. Two types of data sets, ‘de-identified aggregate data’ and ‘de-identified individual-level data’ can both be used by researchers, drug or insurance companies, or even other people looking for family members.
Also, you may be asked if the DNA testing company can store your sample to re-analyze it with future knowledge and technology. To be the safest you can be, it may be best to decline participation in all of this sharing of your data and keeping your sample.
A warning about public databases
Please be aware that if you upload your data to a public database, (such as GEDMatch, which hosts data that people voluntarily upload as a way to find matches with potential relatives who tested their DNA elsewhere,) you may be not only sharing your information but also that of anyone related to you. If “you decide to contribute your DNA to one of these services, you have by default included your parents, your siblings, your kids or your future kids, and future nieces, nephews” in your decision, says Jen King, director of consumer privacy at Stanford Law School’s Center for Internet and Society. (Source: USA Today) This is because it is possible to trace someone based on the DNA of their relatives.
Can I delete my data?
If you have already given your data away to one of the big 3 companies, as we did, you can follow the steps outlined at the bottom of this New York Times article to delete your data: https://www.nytimes.com/2019/06/12/smarter-living/how-to-protect-your-dna-data.html
Yesterday I went into our 23andMe Account Settings and deleted our account. It was simple. After I submitted the request, they sent a confirmation email to the email address I had listed with them. I then logged into that email account and clicked the button to confirm that I wanted all my data deleted. I was then brought back to their website to re-login. And it was done.
Here are our DNA testing company recommendations:
For further reading on the topic of DNA privacy, you can go to Vanderbilt University’s Center for Genetic Privacy…
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