Protect Your DNA Privacy

How To Protect Your DNA Privacy Before And After Taking A DNA Test

It’s so easy and convenient. You order online, spit in a tube, and send it back for testing.

In a few weeks, you receive your DNA results detailing how your ancestry breaks down or if you’d taken a health test, what diseases you are at risk of.

Even as consumer genealogy DNA tests have gotten popular, not many customers are considering the risk to their privacy when they take a DNA test.

But with reports that some companies share the data with law enforcement (remember the golden state killer case?) and sell it to third parties, it’s time to take more control of your DNA privacy.

Protect Your DNA Privacy

Here are some tips on how to keep your data safe and private before and after taking a DNA test.

1. Read the Privacy Policy

I know, I also hate reading the fine print. But this is one of the few times you need to do this laborious task.

If you are going to protect your privacy, you need to know exactly how the company handles your DNA sample and DNA data.

Most companies, especially the big names, now provide simply privacy policies with less legal jargon. So you likely don’t need to have a lawyer sitting next to you to understand the specifics.

Here are some of the things to look for.

  • Beyond the DNA sample, what other data do they collect, such as your name, age, location, etc.?
  • Who has access to the results from the DNA test?
  • Do you still own the sample even after testing? How long does the company hold onto it?
  • Does the company share the results with third parties, whether it’s other companies or researchers?
  • If they do, do you have a say in the matter?
  • What happens to your data if the company collapses or is acquired by another company?
  • Does the company allow law enforcement to access their data? If so, under what circumstances?

If you are comfortable with the privacy policy, you can go ahead and order the test. If not, find another service.

2. Check for Consents

Some companies are polite enough to ask for your consent before they share your data with third parties or use it in research.

Before you order, check if you need to give any consent or, more importantly, withdraw consent. In some cases, automatic consent is assumed if you do not opt-out.

If a company wants to use your data for research, make sure it is stripped data. That is, it lacks personally identifiable information. It is not foolproof, but it offers more privacy.

3. Go with the Big Names

Well-known companies like 23andMe, FTDNA, and Ancestry are nowhere near perfect when it comes to data privacy. But at least they are clear about what they intend to do with your data and in some cases, will even seek your consent.

Smaller and less-known companies, on the other hand, may not provide much protection. For all you know, the company exists sorely to harvest DNA data.

Be especially cautious if the prices are too good.

4. Check Your Profile Settings

You’ve ordered the test and have received the results. One of the most exciting things to do after a DNA test is discovering unknown cousins.

DNA testing companies have large databases and software that automatically link you to likely family members.

A potential family member will be able to view your profile and see some of your personal information.

Check your privacy settings to control how much information other people see. You can hide your last name, location, and family tree.

Most companies also allow you to completely opt-out of the family finder feature, meaning no one can find you in the database. It also means you cannot find other people.

5. Delete Your Data After You Are Done

If you’ve got the information you need, there’s no need to leave your data in the online ether for other people to discover.

All major DNA testing companies, including 23andMe, Ancestry, and MyHeritage, allow you to delete your data through some data that will be retained to comply with federal regulations.

However, deleting data is not always the best option if you took your DNA test for ancestry reasons or to discover new family members.

As the company’s database grows and they do more research, they’ll regularly update customers’ results with new information.


A Final Tip

Protect Your DNA Privacy

If you plan to download your DNA raw data and use it with a third-party service like GEDMatch and Promethease, also check their privacy policy and make sure your data is safe.


 

About the Author Charles M.

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