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Customer DNA test kits from 23andMe, Ancestry.com, and MyHeritage promise a roadmap for your pedigree and, in some cases, information about the diseases you’re most susceptible to. They also ask you to trust your DNA information a lot – think that in some ways this may be undeserved. Here’s how to protect and delete your data if you use one of these services.
A home DNA test kit usually involves rubbing your cheek or taking a saliva sample and sending it to the company. This small sample contains the most personal information you can share: your genetic code. Some companies share this data with law enforcement, and most sell your DNA data to third parties, which can then be difficult to track. Some people who work for small businesses or serve in the military can affect insurance premiums and even the ability to obtain insurance.
Why Is Genetic Testing Bad
While DNA testing has been used in medical and scientific settings for decades, direct-to-consumer testing kits are still relatively new, and legal policies governing the private use of consumer data are still being developed.
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A postdoctoral fellow at the Center for Genetic Privacy and Identity in Community Settings, Dr. James Hazel says there are fewer protections for your data with consumer DNA test kits than with 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.
“In the United States, if you’re talking about genetic data generated outside of a health care setting, the baseline protection is relatively weak,” said Drs. Hazel said. “And it’s usually provided by the Federal Trade Commission. So the Federal Trade Commission, although not specific to DNA data, has the ability to police unfair and fraudulent business practices across all industries. In addition, there are no laws specifically applicable in the United States.”
For most DNA testing companies, the best way to protect your data is not to put it in the first place. In 2017, Dr. Hazel’s team studied 90 DNA testing companies and found that they needed most of their privacy policies. Some companies only had policies governing the use of their websites, while others did not indicate whether personally identifiable information was removed from the sample before it was sent for testing. Some large companies may have acceptable policies, but Drs. “You probably shouldn’t trust small testing companies that you haven’t heard of,” Hazel said.
Understanding Ownership And Privacy Of Genetic Data
“When we looked at 2017, we found that 40% of companies did not have a written policy that specifically mentioned genetic data,” Drs. Hazel said. “We’ve seen these smaller companies that you may not have heard of have privacy policies that are one paragraph, two paragraphs and don’t really provide any information.”
The most well-known test companies are safe islands – perhaps because they are so famous. “And so when we have big companies that are constantly in the public spotlight, I think those companies are generally more accountable,” Drs. Hazel said. “And their privacy policies are generally more comprehensive.”
The three biggest names in national DNA testing are 23andMe, Ancestry.com, and MyHeritage. Below are specific instructions on how to delete their privacy policies and data. Wirecutter, a product review website owned by The New York Times Company, reviewed 15 DNA test kits and recommended AncestryDNA or 23andMe.
When you first set up a new smartphone, you may be asked to allow the company to track your location or share data about how you use your phone. Likewise, once you’ve decided on a DNA test to try, there are a few things to keep in mind. DNA testing companies ask a lot of questions that you might find annoying, but if you want to protect your data, you need to read them all carefully.
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Clients “want to see what options they have, what activities they can choose or turn off,” Drs. Hazel said. Some companies like 23andMe have a separate agreement asking permission to use your DNA data in research studies. This data has been removed to identify labels such as your name or address that they specifically associate with you, but your privacy is not always guaranteed to be protected.
In some cases, Drs. The companies use “anonymized aggregate data,” Hazel said, which is relatively secure. This type of data may include summaries that do not call out specific individuals, such as the percentage of people with a specific genealogy.
“But these companies also use anonymized personal data, where, as you know, there is always a risk that a person will be re-identified from that data,” he said. Hazel said. This type of data can describe your unique genetic makeup without using your name. Although this information is unlikely to be linked to you, researchers have shown that it is possible. Law enforcement has publicly used crime scene DNA shared with the genealogy research site to track down the suspect in the Golden State killer case, though he himself never used DNA tests, showing that anonymous data can also be used to identify people.
If you authorize a company to share your data with another research organization, you can revoke this authorization later. However, the deletion of your data from third parties already received will be difficult, if not impossible. It is also difficult to guarantee that these third parties will not share your data with another company or research organization down the road. “Once that data is shared with a third party, it’s really hard to control further sharing,” he said. Hazel said. That doesn’t mean you shouldn’t share data with researchers, but that you should be aware of the risks involved.
What Is Genetic Testing? The Complete Wired Guide
You may be asked for permission to allow the DNA testing company to store your sample, which means they can go back and re-test if more advanced techniques are developed in the future. Some sites also offer a Family Finder feature that allows potential relatives to contact you if your DNA matches. All of these grants can be very personal permissions. Reputable companies will be sure to give you as much information as possible, but be sure to read what you have to say before hitting “accept”.
Each company has its own steps for deleting your data. Below, we’ll cover the steps for each of the big three companies, as well as what’s involved in deleting your data with that company.
To delete your 23andMe data, go to your Account Settings page and find the “Delete your data” option under “23andMe data”. You can download all or part of your data before deleting it. If you agree to keep your sample, it will also be physically destroyed.
However, 23andMe uses a laboratory that must comply with the Clinical Laboratory Improvement Amendment or CLIA rules. This means that certain data, including your DNA, gender and date of birth, will be retained to comply with these rules. However, the company will no longer use this information. You can learn more about the business deletion process here.
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To delete ancestral data, log in to your account, click on the “DNA” tab and select “Summary of your DNA results”. From there, click on “Settings” and select “Delete test results”. You will need to re-enter your password to confirm that you want to delete your information.
To delete data from MyHeritage, log in to your account, click on your name in the upper right corner and select “Account Settings”. From there, scroll to the bottom of the page and click “Delete Account”. You can also choose to delete your Family Tree Builder project or site without deleting your entire account, but this will not delete your data. Since MyHeritage Labs is CLIA certified, they will also retain certain information about you.
DNA testing companies have improved their methods of deleting your data over the years. However, since the US government requires these companies to retain DNA information in order to comply with quality control guidelines, this is never possible.
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