AncestryDNA

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Hollis Johnson
  • Investigators say they cracked the cold case of the Golden State Killer with help from data on a genetics website.
  • The investigators revealed that they uploaded a suspect’s raw DNA signature – sourced from an old crime scene sample – to a site called GEDmatch.
  • The case has raised privacy concerns among people who have submitted their DNA data to similar genetics sites.
  • Here’s how to delete your DNA and data from 23andMe, Ancestry, and Helix.

The recent arrest in one of California’s most infamous serial-killer cases was based in large part on a DNA sample submitted to a genetics website by a distant relative of the suspect.

If that news has you concerned about the security of your own genetic material, you may be wondering how to delete it from genetic databases kept by popular genetics testing companies like 23andMe and Ancestry.

Those two databases were not used by investigators to track down Golden State Killer suspect Joseph James DeAngelo. Instead, investigators used a service called GEDmatch, which lets customers upload a raw DNA signature. Investigators created a profile for the suspect using DNA sourced from a long-stored crime scene sample, and found matches between DeAngelo’s crime scene DNA and the DNA of a distant family member.

23andMe, Ancestry, and Helix (National Geographic’s genetics service) only accept saliva samples for genetics testing – an easy way of obtaining DNA. But a similar company called Family Tree DNA could likely accept hair or blood, according to Joe Fox, an administrator for one of the company’s surname projects.

Whichever way a company gets your DNA, privacy advocates say there’s cause for concern. Although genetic data is ostensibly anonymized, companies can and do sell your data to third parties like pharmaceutical companies. From there, it could find its way elsewhere, advocates say.

Here’s how to delete your data from a few of these services.

23andMe could keep your spit and data for up to 10 years

23andMekit

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23andMe Instagram

The core service provided by most commercial genetic tests is built on the extraction of your DNA from your spit – that’s how you get the results about your health and ancestry information.

After registering your spit sample online with 23andMe, the company will ask if you’d like your saliva to be stored or discarded. But you are not asked the same question about your raw genetic data – the DNA extracted from your spit.

Based on the wording of a document called the “Biobanking Consent Document,” it’s a bit unclear what happens to that raw DNA once you decide to have the company either store or toss your spit.

Here’s the statement’s exact language:

“By choosing to have 23andMe store either your saliva sample or DNA extracted from your saliva, you are consenting to having 23andMe and its contractors access and analyze your stored sample, using the same or more advanced technologies.”

That leaves a bit of a grey area as far as what 23andMe has the ability to keep, and how they can use your DNA information. If your spit or DNA sample is stored, the company can hold onto it for between one and 10 years, “unless we notify you otherwise,” the Biobanking Consent Document states.

Still, you can request that the company discard your spit. To do so, go to its Customer Care page, navigate to “Accounts and Registration,” scroll to the bottom of the bulleted list of options, and select the last bullet titled “Requesting Account Closure.”

Once there, you must submit a request to have your spit sample destroyed and/or have your account closed.

Ancestry won’t toss your spit unless you call, but you can delete your DNA results

Ancestry

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Sarah Kimmorley/Business Insider Australia

If you want to delete your DNA test results with Ancestry, use the navigation bar at the top of the homepage to select “DNA.”

On the page with your name at the top, scroll to the upper right corner, select “Settings,” then go to “Delete Test Results” on the right side column.

According to the company’s latest privacy statement, doing this will result in the company deleting the following within 30 days: “All genetic information, including any derivative genetic information (ethnicity estimates, genetic relative matches, etc.) from our production, development, analytics, and research systems.”

But if you opted into Ancestry’s informed “Consent to Research” when you signed up, the company says it can’t wipe your genetic information from any “active or completed research projects.” It will, however, prevent your DNA from being used for new research.

To have the company discard your spit sample, you must call Member Services and request that it be thrown out.

Helix will discard your spit upon request, but may keep data ‘indefinitely’

In its most recently updated Privacy Policy, Helix states that it may “store your DNA indefinitely.”

It also keeps your saliva sample, but you can request that it be destroyed by contacting Helix’s Customer Care via a request form that looks similar to 23andMe’s.

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Lydia Ramsey/Business Insider
  • “Direct to consumer” genetics tests have soared in popularity in recent years as the cost of genetics sequencing has plummeted.
  • AncestryDNA, Helix, and 23andMe are some of the companies offering the tests.
  • But 23andMe is the only one with approval from the Food and Drug Administration to include information about breast-cancer risk based on three mutations on the BRCA 1 and 2 genes.
  • Experts say a “negative” result on 23andMe’s test may be give some people a false sense of security that they are not at risk for the disease.

The eyes may be the windows to the soul, but spit is increasingly the portal to your health.

The consumer genetics company 23andMe recently got a green light from the US Food and Drug Administration to include information on breast-cancer risk in its online customer reports, based on screening for three of the multiple genetic mutations linked to the disease. But the new test could be dangerously misleading, according to several genetics experts in the industry who spoke with Business Insider about the new test.

23andMe is one of a handful of new companies offering spit-in-a-tube genetics tests that don’t require a doctor, also known as direct-to-consumer genetic testing. The tests have soared in popularity in recent years as the cost of genetics sequencing has plummeted.

According to 23andMe, the company has taken multiple steps to ensure that customers do not misinterpret their results. Still, experts say many people could be misled because they fail to read the so-called fine print.

The problem with 23andMe’s new test is simple, according to John Witte, the program leader for the cancer genetics program at the University of California at San Francisco. If you do 23andMe’s most recent genetics test and come up “negative” for the three cancer-linked mutations it screens for, you may believe your cancer risk is either low or nonexistent.

But it isn’t.

That’s something 23andMe clearly states in the report that will accompany the new test, Andy Kill, a representative for 23andMe, told Business Insider. The company’s report will include a mandatory eight-page “education module” that customers must complete before they can see their results. It contains the following statement:

“Women without a variant are still at risk of developing cancer. It’s important to continue with any cancer screenings your healthcare provider recommends.”

Despite all those warnings, Witte and other experts believe the test could still be troublesome – especially for people who don’t thoroughly read all of that information.

“There are many other genetic variants that are linked to breast cancer that wouldn’t be picked up by 23andMe’s test,” Witte said. “A ‘negative test’ just means you don’t carry one of the three mutations it tests for. That’s all it means.”

Angelina Jolie and the importance of genetic counselors

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Ethan Miller/Getty Images

23andMe’s latest test, which will be available to customers in the coming weeks, reveals whether you have a mutation on two genes that have been found to be closely linked to breast and ovarian cancer – also known as the BRCA genes.

The actress Angelina Jolie brought public awareness to the mutations when she made the decision to have her breasts and ovaries removed after testing positive for the BRCA1 mutation.

The problem with a genetics report coming without accompanying information from a doctor or genetic counselor, experts say, is that testing positive or negative for the mutations doesn’t reveal whether you’ll get breast cancer. It is merely one of several factors, including things like family history, ancestry, and lifestyle, that ultimately determine the development of the disease. To understand the next steps you should take, you should have a physician or a genetics counselor at hand, Witte said.

Jolie did not make the decision to have her breasts and ovaries removed solely because she carried the BRCA1 gene mutation, which interferes with how genes – the blueprint for the proteins that make up cells – function. As she wrote in a 2015 essay for The New York Times, Jolie also had a family history of breast cancer, and that strongly influenced her choice.

Normally, BRCA genes function as safeguards against cancer. They protect cells from growing out of control and developing into the disease. Healthy BRCA genes repair genetic errors that can occur when cells multiply, for example, which is why an improperly functioning or mutated BRCA gene – though rare among the general population – can sharply increase cancer risk.

It’s the job of a physician or genetic counselor to walk through all of this dense, complicated information with a patient.

“I hope the people who take this test have genetic counselors,” Witte said. “I hope people will at least go see their doctor.”

Other limitations of the new test

Because BRCA mutations are so rare among the general population, 23andMe’s new test holds real value only for people with Ashkenazi Jewish heritage, Pamela Munster, a professor of oncology at the University of California at San Francisco who is a coleader of the Center for BRCA Research, said in an email. For people with Ashkenazi Jewish heritage, the chances of inheriting the mutation are 10 times as high as they are for the general population, of whom only 0.25% have the mutation.

“If you’re Ashkenazi Jewish, those are the most common ones for that population, but I don’t know that that distinction is going to come through to the average person,” Witte said.

The new test does not address breast-cancer risk variants that are unusually common among members of other populations, such as people with Latino/Latina heritage, Witte added.

“I do know that in the Latino/Latina populations there are other variants linked with breast cancer risk. So the test isn’t going to be very informative for them. But the point is – will they know that it’s non-informative? That’s a concern.”

Kill, the 23andMe representative, said the new test underwent months of FDA review and was safe: “The BRCA-related report is in the same format as our other genetic health risk reports which have undergone extensive user comprehension studies submitted to FDA.”

A spit sample for a DNA test.

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A spit sample for a DNA test.
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Hollis Johnson
  • I tried DNA tests from 23andMe, Ancestry, and National Geographic to learn about my family’s history and my health.
  • The tests vary in terms of what information they provide and how precise they are.
  • I’m often asked which test I’d recommend. My answer boils down to one question: What do you want to get out of the test?
  • From migration patterns, to how much DNA you have in common to a Neaderthal, here’s what you can learn from each report.

I’ve sent my spit off for more genetics tests than anyone else I know.

The tests analyzed the DNA in my saliva to find out a host of different things about my ancestry and health.

Genetic testing companies have proprietary sets of data and various ways of analyzing information, so each one I tried offered a distinct approach. One provided details about my great-grand relatives, while others listed how much Neanderthal DNA I have.

Every so often, someone asks me which test I recommend. And my answer boils down to one question: What do you want to get out of the test?

Let’s compare three direct-to-consumer tests: AncestryDNA, 23andMe, and National Geographic’s Geno 2.0 test.

23andMe gave me a comprehensive picture of my health and ancestry that keeps growing

23andMe kit

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Lydia Ramsey/Business Insider

23andMe currently offers two versions of its test: The $199 version comes with health and ancestry components, whereas the $99 version just has the ancestry test.

To analyze your DNA, 23andMe uses a technique called genotyping. Humans have 3 billion base pairs of DNA in our genome – that’s a lot of information to sift through – so genotyping technology looks for specific parts of DNA and pieces them together.

The health reports can tell you information about your physical traits (like if you’re likely to have dimples or curly hair), wellness (how well you metabolize caffeine or if you’re a sprinter), and carrier status for certain genetic mutations.

The FDA now allows 23andMe to provide reports on a person’s genetic risk for certain diseases, including Alzheimer’s and Parkinson’s diseases. In total, the test now has more than 74 reports, and more get added all the time. I often get emails telling me that a new test is ready for me – recently I got one that looks at my genetic health risk for celiac disease.

With 23andMe’s ancestry reports, users have access to information about their ancestry composition (which geographic regions your genes align with), haplogroups (genetic populations that share a common ancestor), and Neanderthal ancestry. They also get access to something called a DNA Relatives tool, which 23andMe users can opt into to connect with other users and find out whether they have relatives in the system.

In February, 23andMe updated its ancestry reports to provide more specific regional information. My report used to specify just Scandinavian ancestry, but now specifies Norway as a country where my ancestors lived within the past 200 years. The company also maps out how many generations ago you may have had ancestors from a particular region. For example, I may have had a Finnish ancestor sometime in the mid-to-early 1800s or late 1700s, while my French and German ancestors date even earlier.

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23andMe

Verdict: If you’re looking at this test as a science experiment, using it as a way to get involved in research, or viewing it as a chance to learn about your genetic health risks, then this is a fit for you. (Though if you opt for the full test, there are some considerations patient groups and genetic counselors would like users to take into account.)

If you just want to know your ancestry percentages – especially now that they’re more exact – and how much Neanderthal variants you have, the $99 version is a good bet.

AncestryDNA connects the dots between you and your ancestors

AncestryDNA test box

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Lydia Ramsey/Business Insider

Ancestry’s test, as its name suggests, is all about family histories and genealogy. You won’t find health and wellness reports in its $99 test, but you will find information about where your family comes from and how that lineage connects you to potential ancestors.

Like 23andMe, Ancestry uses genotyping technology to analyze your DNA. The service also helps you link up your DNA test to a self-reported family tree.

There’s a lot to discover within that data – for example, I was matched up with ancestors dating back to the 18th century, and could explore how I was connected to them.

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AncestryDNA

If you simply want to know, say, what percent Scandinavian you are, Ancestry’s site makes it easy to focus on those numbers. Those who want to dig deep into family trees can do that as well. I would definitely consider purchasing this test for a relative who enjoys researching family history.

Ancestry has also added a DNA story element that maps out your ancestors’ migration patterns. My ancestors started moving to the Midwest in the US around 1825-1850.

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AncestryDNA

Verdict: If the idea of tracing your family tree through the generations and connecting with distant relatives gets you excited – but you’re less interested in health information – this is the test for you.

National Geographic’s test uses next-generation sequencing technology to inform its reports

Helix DNA 1

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Hollis Johnson

National Geographic has an ancestry test called Geno 2.0.

The test – which currently costs $99.95 but originally was $199.95 – is different from AncestryDNA and 23andMe in that it uses next-generation sequencing instead of genotyping technology.

Unlike genotyping, which just looks for specific parts of DNA and pieces them together, next-generation sequencing looks at only the protein-encoding parts of your genome, called the exome. The next-generation sequencing analyzes roughly 2% of those 3 billion base pairs.

The additional information this technique picks up could lead to new, more specific genetic testing features in the future, especially as our knowledge of the genome and exome continues to grow.

Helix DNA 5

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Hollis Johnson

Based on next-generation sequencing, National Geographic’s test provides three ancestry reports.

  • Regional, which tells you where your ancestors came from more than 500 years ago. This didn’t get into as many specifics in my case as AncestryDNA and 23andMe’s tests did.
  • Deep, which shows your ancestors’ migration patterns thousands of years ago.
  • Hominin ancestry, which tells you how much DNA you have in common with a Neanderthal.

The verdict: For what you get, the test doesn’t have nearly the range that other ancestry tests have. And when not on sale, it’s more expensive. National Geographic, however, says the revenue funds nonprofit “conservation, exploration, research, and education” efforts.

Privacy considerations

Another aspect to take into account when deciding which DNA test to take is the issue of privacy. The tests do, after all, deal with information that’s fundamental and unique to every individual.

In a blog post published December 12, the FTC recommended reading the fine print. “If you’re thinking about buying an at-home DNA test kit, you owe it to yourself – and to family members who could be affected – to investigate the options thoroughly,” it says.

James Hazel, a post-doctoral research fellow at Vanderbilt University’s Center for Biomedical Ethics and Society, has been looking into the privacy policies of consumer genetics tests. He said the FTC’s suggestion is very important.

“We are good at clicking ‘agree’ and not reading the terms of service,” he told Business Insider in December.

Questions to keep in mind when reading through the terms of service include:

  • Who owns your DNA?
  • Who gets to see your de-identified (not attached to your name) information?
  • How is the data that’s tied to your identifiable information used?
  • Can you opt out of giving research partners your genetic data?
  • Can you wipe your information after taking a test?

There are other ancestry tests I have yet to try

The DNA-testing field is exploding. In the past few years, the number of people taking DNA tests has picked up pace. More than 12 million people have had their DNA sequenced, and almost 10 million of those tests have happened since 2016. With that, there’s likely a growing number of tests emerging that I haven’t had a chance to try.

MyHeritage has a DNA test that’s currently going for $49 (originally $99). Its tests, like Ancestry’s, are focused on building family connections and trees.

Others, like FamilyTree DNA (which offers tests from $59) are also geared toward people who want to find genetic links to relatives.

Each company has its own methods, algorithms, and data, which is why the reports differ. Because the three main direct-to-consumer genetics tests are around the same price, you should go with the one that will answer your most pressing questions.

This post was originally published in April 2017 and has been updated to reflect changes to the DNA tests.