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Do DNA Tests Sell Your Info?
Updated on August 16, 2022
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Do DNA Tests Sell Your Info?

Should you be concerned about a DNA testing company selling your data?

Maybe.

Do-it-yourself DNA testing has soared in popularity over the last few years. Many people use it to learn more about their ethnic heritage and evaluate their health.

People collect their sample and mail it to one of the various genetic testing companies. The company provides a variety of information after evaluating the sample.

They can then use the genetic data results to:

Testing companies claim the process is safe and secure.

But it’s easy to understand why people would be concerned about how their personal information is handled. DNA data is more sensitive than your credit card or social security number. 

So how can we be sure that the genetic information provided from taking an at-home DNA test won’t be sold or used in other ways?

Most testing companies have you sign an informed consent clause. This means you agree to the:

  • Storage of your DNA
  • Release of your DNA
  • Use of your DNA for a variety of reasons

These reasons range from scientific research to assisting law enforcement with solving crimes.

So if you aren’t a criminal and you don’t believe in conspiracy theories, there’s no reason to worry. Right?

Not necessarily.

Do DNA Tests Sell Your Info? 2

Can Your DNA Be Used Against You?

Law enforcement can obtain your DNA or the DNA of any of your family members from testing sites with a search warrant. The identification and arrest of the Golden State Killer is one example.

But just because you aren’t an infamous murderer doesn’t mean you don’t need to be concerned. Law enforcement agencies aren’t the only ones interested in DNA data.

Your privacy could be at risk no matter who you are. Anyone taking a DNA test should be aware of the risks that come with testing.

DNA Testing Companies Sell Your DNA

The sale of your DNA affects far more people than other issues.

For example, what if DNA companies can sell your data to insurance companies? Could the information be used to deny you coverage?

If DNA test results show you have a high risk of a certain disease due to genetics, would your insurance premium increase?

It’s hard to tell what risks could arise in the future.

At-home DNA testing is relatively new. Genetic privacy laws continue to evolve, but are behind the technology.

Some people recognize the risks of DNA technology. Some testing companies are working on their own to create best practices.

Additionally, the Future of Privacy forum is working on protecting consumers.1

The organization organized an independent think tank focused on public policy and the DNA research industry. The forum also encourages transparency and clear communication with consumers.

Do I Own My Own DNA Data?

One of the biggest concerns is about ownership of your DNA. Who owns your DNA sample after you submit it to the testing company?

In general, you own your DNA in the same way you own your body.

This remains the case even if you submit a sample for testing.

But that doesn’t mean you retain complete control over your sample once you give it away.

This is why it’s so important to delete your data after you’ve downloaded it.

Is It Safe to Take a DNA Test?

Despite claims that your data is protected, there’s only so much a DNA testing company can do to protect your information.

DNA testing companies are making an effort to provide protection. For example, companies are:

Creating a Standard Security Policy

Treating customers’ personal information the same across the industry means that best practices are always in use. Customers don’t need to figure out which company offers the best protection.

Storing Data in a Physically Separate Location

Attackers would need to connect data from two locations to make it useful.

Encrypting Data

Hackers will find it difficult to decode the information and connect it to specific people.

Assigning Randomized ID Numbers

This makes the genetic information less identifiable.

Many of these tools mean that even if data is stolen, there isn’t much that criminals can do to interpret or use it in any way.

These efforts mean that hacking isn’t as much of a threat as it could be.

However, it’s a different story if the data is sold. In this case, the buyer is given the tools to make sense of it.

Protection of Your DNA Data Should Matter to You

Have you thought about taking a DNA test?

Have you already done so?

It might be time to take another look at the situation.

Many people assume everything will be fine. They don’t dig deeper into the risks of sharing their most personal information with companies.

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What Can You Do to Make DNA Testing Safe?

There are several things you can do to reduce your risk if you choose to take an at-home DNA test. 

For example:

Just because something isn’t a risk right now doesn’t mean it won’t be in the future. Remember, there’s no way to fully understand the long-term consequences of someone stealing your genetic code.

Do DNA Testing Companies Sell Your Data?

Yes.

Most genetic testing services make the majority of their money from selling your information to other DNA testing companies.

Why?

To expand their databases so they can provide the most accurate results possible.

About half of the companies selling ancestry information are selling to more than just one company.

Deleting your raw data from the primary testing company isn’t enough.

Make sure you check other companies to see if you can find your results. If so, delete that data, too.

There are no guarantees. But if you’re going to take any genetic tests, it’s important to understand the risk and do all you can to protect your data.

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Looking for a DNA test that's accurate and can tell you about your health and heritage?

Resources

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  1. Ethics.Future of Privacy Forum, fpf.org/issue 
  2. CDC. “Genetic Testing.” CDC, 2019, www.cdc.gov/genomics/gtesting/genetic_testing.htm.
Kelly Jamrozy
Kelly Jamrozy
Content Contributor
Kelly has experience working with clients in a variety of industries, including legal, medical, marketing, and travel. Her goal is to share important information that people can use to make decisions about their health and the health of their loved ones. From choosing the best treatment programs to improving dental and vision health to finding the best method for helping anyone who is struggling with health issues, she hopes to share what she learns through informative content.
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