Beware of these four risks when you share your DNA with a genetic testing company

KANSAS CITY, Mo. — It’s a quick test that can unlock the secrets of the past, present, and potential risks in the future.

But is the DNA test dilemma worth the risk?

According to MIT, more people took consumer DNA tests in 2017 than ever before. Most of those results were mailed to homes in the United States. If you crunch the numbers, about 25% of American adults have taken one of the popular at-home tests.

Massive price drops in 2017 led to a surge in popularity with several companies running Black Friday promotions offering test results for under $60, as well as other deals.

The market for the kits continued to grow because it’s a simple, easy test that can answer all kinds of questions we have about ourselves and provide answers to questions we don’t even realize we have.

But, before you dive into your family’s DNA makeup, there are some things you need to consider before buying a kit.

The Risks

There are many risks, that pop up when people start taking about these at-home kits. Ironically, the biggest risks don’t have anything to do with health issues or previously unknown family members the tests may identify. Here are four of the biggest risks to consider.

  1. Hacking: The DNA data collected from your sample will be stored on servers. It’s well known that servers can be hacked. In fact, it’s already happened to millions of people who used the testing service MyHeritage. The company announced the breach in 2018. The good news is that MyHeritage says the hackers didn’t get to any DNA data. This time.
  2. Selling Your Data: Millions of people have already signed on to allow genealogy companies to share their DNA data with third parties. It’s one of the things you agree to when you hit “accept” on their sites. According to The New York Times, that information can impact insurance premiums for military families and even small business owners.
  3. Crime Investigations: It’s not a secret that millions of people are simply handing over their intimately private data to these companies. And law enforcement agencies may want access. In fact, that’s exactly what provided the break needed to identify and charge a suspect in the Golden State killer case in 2018.
  4. Privacy: Once the results are out there, they are hard to get back.

Protect Yourself

Obviously, the easiest way to protect your DNA is to never submit it.

If you’ve decided that you want to go ahead with a test, you may want to consider taking to your doctor about it instead of grabbing a kit from the store. If a doctor takes your DNA sample, it’s protected by HIPPA, just like other medical procedures.

HIPPA determines how medical information can be shared. HIPPA doesn’t cover consumer, or at-home, DNA kits. It actually falls under the authority of the Federal Trade Commission, which has different policies and protections.

While genetic testing can provide all kinds of information, how much do you know about the company you’ve chosen to do your DNA test?

If you’re thinking about it…

Here are four things to consider to help protect yourself in the future.

  1. Actually read the company’s privacy policy:Yes, we mean all the tiny type on the paper included with the actual DNA test. The policy will let you know what kind of data the company will collect from your test and if you have any control over that information. The policy will also explain how that data is used.
  2. Know what you’re signing up for:Each test comes with a laundry list of questions. If you’re concerned about protecting your DNA, you’ll need to read all of these questions, too. Companies offer choices when it comes to what you can opt into or out of. Some may ask for your permission to collect and distribute your results for research studies only. The data is SUPPOSED to be stripped of any factors such as you name or address. It’s unlikely that the information will be linked back to you, but it can happen. Others want to go so far as keep your actual DNA sample to test again in the future.
  3. To find family… or not:Think about why you are taking the test. Is it to answer health questions or for other reasons? Some companies will also offer to match your DNA to other samples. That may connect you to other extended family members you never knew existed. And it may come with other issues.
  4. Size matters:Health and legal experts suggest going with a company that you’ve heard of, instead of the one that’s the cheapest. In a 2017 study published in the Cornell Journal of Law, researchers found that larger consumer testing companies are more likely to have a more extensive privacy policy, offering you better protection.

What if I’ve already taken a test?

You’ve taken the test and have your results. Now you’re concerned about having those results floating around out there.

Don’t panic, but keep in mind that the U.S Government has quality control guidelines. Because of those guidelines, companies are required to keep DNA information. That means if you’ve submitted your DNA, it’s not possible to completely delete the information.

However, all hope is not lost. This is the closest you can get to purging your information from four of the largest DNA Kit sites:

Ancestry

1. Sign into your Ancestry account
2. Click on the DNA tab
3. Choose “Your DNA Results Summary”
4. Click Settings
5. Choose “Delete Test Results” and enter your password again to confirm you want to delete the details
If you complete this process, you will permanently lose your ability to view any AncestryDNA data related to your search. It will also prevent you from showing up in any family finder searches.

23andMe

1. Sign into your 23andMe account
2. Click on the account settings page
3. Find the “23andMe Data”
4. Click on “Delete Your Data”
If you complete this process, you will have the option to download your data before it’s deleted.

MyHeritage

1. Log into your account
2. Click your name in the upper-right hand corner
3. Click “Account Settings”
4. Click “Delete Account” at the bottom of the page

Living DNA

You’ll need to contact the company at the help desk. Be prepared to provide your unique LD reference number and why you’d like to delete your data.

It’s also possible to revoke the permission if you’ve already allowed a company to share your data. Keep in mind it will be nearly impossible to delete your data from third parties that already have it on file.

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