- Hollis Johnson
Perhaps you didn’t intend for that spit sample you shipped off to be used for research on antacids. But that could be what happens with some of the data that genetics-testing companies like Ancestry, 23andMe, and Helix have collected from billions of customers and stored in their databases.
Both Ancestry and 23andMe have a history of sharing anonymized consumer data with private companies, also known as “third parties.” Last week, 23andMe took that policy to a new level when it announced a plan to share the genetic data of millions of consumers with pharmaceutical giant GlaxoSmithKline to help the company develop new drugs.
23andMe also collaborates with handful of other drug companies and with institutions like P&G Beauty, the company behind Pantene shampoo and the antacid Pepto-Bismol.
Helix, the genetics-testing company spun out of Illumina, has partnerships with roughly 25 companies as well.
Here are the private companies that the biggest genetics-testing companies share data with
Apart from its partnership with GlaxoSmithKline, 23andMe has active partnerships with at least four other large pharmaceutical companies: Alnylam Pharmaceuticals, Biogen, Pfizer, and Genentech.
Another 23andMe collaborator is P&G Beauty, the company behind products like Crest toothpaste, Ivory soap, and Bounty paper towels. In addition to these private partners, 23andMe shares its data with several public academic institutions and nonprofit research groups like the University of Chicago.
Ancestry, which maintains a 5-million-person consumer database of genetic information, once partnered with Google’s stealthy life-extension spinoff Calico to study aging. But a company spokesperson told Business Insider that Ancestry is currently only partnered with universities and research institutions. These include the University of Utah and the American Society of Human Genetics.
Helix has active partnerships with about 25 companies, according to Justin Kao, Helix’s co-founder and senior vice president of business development. Kao told Business Insider that the list includes at-home lab testing startup EverlyWell and healthcare provider Geisinger Health.
But unlike Ancestry or 23andMe, which have shared the data of millions of anonymized customers with private companies, Helix does so only when the user consents via one of those company partners. EverlyWell, for example, uses Helix’s technology to offer customers at-home DNA tests for food sensitivity and metabolism, while National Geographic uses Helix for its genealogy tests. Those companies may prompt a user to opt into research that they are doing, and only then would their data be shared.
Why genetics testing companies share your data with third parties
- Hollis Johnson/Business Insider
A big reason genetics-testing companies share data with third parties is for research. Many scientists want to learn more about the genetic roots of various conditions and diseases in the hope that this information will lead to better treatments or even cures. Both nonprofit academic institutions and drug companies are doing this kind of work.
“We all have some disease or health issue that we care about. 23andMe has created a research platform to enable interested customers to participate in research – to not wait for solutions to appear, but for people to come together and make discoveries happen,” 23andMe CEO Anne Wojcicki wrote in a letter to customers after the deal with GlaxoSmithKline was announced. 23andMe did not respond to a request for further comment.
The average customer who chooses to let 23andMe share their data for research contributes to more than 230 studies on topics including asthma, lupus, and Parkinson’s disease, the company says.
Similarly, Ancestry’s partnership with Google’s Calico was aimed at studying the genetics of longevity, though neither company has yet published any research that resulted from the collaboration.
How to choose what data you share – or delete it altogether
When you register your spit sample with Ancestry, 23andMe, or Helix, you’re offered choices about whether you want to share your data, when, and with whom. However, privacy advocates have pointed out that these options can often be confusing.
Plus, when asking customers whether they agree to share their data with third parties, Ancestry, 23andMe, and Helix all use different language to describe the choices and present the option at a different stages in the sign-up process. That can make wiping your data from any of those platforms difficult and time-consuming.
Furthermore, if a leak or hack were to happen, such incidents could allow your data to find its way elsewhere, perhaps without your knowledge.
It may also be difficult to prevent your data from being used by a new collaborator who wasn’t partnered with one of these companies when you initially signed up.
Through 23andMe’s 4-year partnership with GSK, for example, GSK gets anonymized summaries of data from customers who’ve opted to share their data for research. Privacy advocates find that vexing because the data of existing customers who may have previously opted into sharing their data could now be included as part of the larger base of data shared with GSK.
“The very setup of this venture suggests that its initiators are not quite serious about 23andMe’s customers’ informed consent,” Udo Schuklenk, a professor of bioethics at Queen’s University, told Business Insider via email.
It’s not easy to delete your information from genetics-testing platforms after you’ve signed up. (If you want to delete your genetic data from one of these sites, check out our guide). If you’ve opted to share your data for research, 23andMe could keep your physical spit sample – and the genetic data gleaned from it – for up to a decade.
- Hollis Johnson
- Genetics testing company 23andMe made headlines last week when it announced it would share consumers’ anonymized genetic data with pharmaceutical giant GlaxoSmithKline.
- Companies like 23andMe frequently share customer DNA data with other institutions, also known as “third parties.”
- Ancestry, another popular company like 23andMe, had a partnership with Google’s stealthy life extension spinoff Calico to study the genetics of longevity. That partnership has now ended.
As is often the case in the world of scientific research partnerships, almost as quickly as a new deal begins, another ends.
Popular spit-in-a-tube genetics-testing company 23andMe made a splash last week when it announced a plan to share the anonymized genetic data of millions of consumers with pharmaceutical giant GlaxoSmithKline to help the company develop new drugs.
Ancestry, which maintains a database of genetic information built on the spit samples of more than 5 million consumers, had been partnering with Google’s stealthy life extension spinoff Calico to study aging and longevity. The agreement, which was finalized almost exactly three years ago, recently ended, an Ancestry spokesperson told Business Insider.
Apart from a 2015 press release announcing the agreement, neither company has said much about what the research partnership did.
Genetic testing companies frequently share customer DNA data with other institutions. These can include public research groups like state universities or private drug makers like GSK.
Looking at genetic data for clues to a long life
Calico was ostensibly interested in sorting through Ancestry’s treasure trove of genetic data to identify commonalities among people who live a long time. Data on individuals who live longer-than-expected lives compared to their shorter-lived family members might be especially useful. This could reveal common genetic traits among those longer-lived folks that might play a role in helping them outlast their peers.
“The Calico science team decided, what if we used a data set like what Ancestry.com has to identify people who have a longer-than-expected lifespan in their family?” Ken Chahine, the senior vice president and general manager of Ancestry, told Business Insider back in 2015.
Since then, neither company has published any research from the collaboration, but that doesn’t mean none was produced, someone familiar with Calico’s work told Business Insider.
“Ancestry previously had a relationship with Calico which focused on understanding human longevity and developing ways that all of us can lead longer and healthier lives,” an Ancestry spokesperson told Business Insider, adding, “This relationship has now ended.”
According to Calico, some of the results of its research with Ancestry will be published in a peer-reviewed journal soon.
Ancestry can share your anonymized genetic data with third parties like Calico if you opt-in to what the company calls an “informed consent to research.” This option comes up after you submit your spit sample during the online registration process. (If you decline the opt-in, your data will not be shared with third parties, the company says.)
Those third party groups can include for-profit private companies like Calico as well as nonprofit research groups like the University of Utah and the American Society of Human Genetics – both of which still have active partnerships with Ancestry.
How to delete your DNA data
If you choose to share your genetic data with a company like Ancestry or 23andMe, it can be a difficult decision to undo. Once you opt-in, the company will not wipe your genetic information from any “active or completed research projects,” according to its latest privacy statement.
However, if you’d like to stop your DNA data from being used for new research, you can.
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 column on the right side. Doing this will result in Ancestry 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.”
If you want to take the additional step of having the company discard your physical spit sample, you must call member services.
- Hollis Johnson
- Popular DNA testing companies like Ancestry and 23andMe can – and frequently do – sell your data to drug makers.
- On Wednesday, pharmaceutical giant GlaxoSmithKline announced it was acquiring a $300 million stake in 23andMe – making that connection much more explicit.
- If that new has you wondering about how your own genetic material is being used, here’s a guide to deleting your DNA sample and data from 23andMe, Ancestry, and Helix.
Popular spit-in-a-tube genetics testing companies like Ancestry and 23andMe can – and frequently do – sell your data to drug makers. But on Wednesday, one of those partnerships became much more explicit: pharmaceutical giant GlaxoSmithKline announced it was acquiring a $300 million stake in 23andMe.
As part of a 4-year deal between the two companies, GlaxoSmithKline will comb 23andMe’s genetic data to look for potential new drugs to develop, also referred to as drug targets. It will also use the genetic data to inform how patients are selected for clinical trials.
If that news has you thinking about how your own genetic material is being used for research, know that although the DNA you submit to these services is ostensibly anonymized. However, leaks can happen, and privacy advocates note such incidents could allow your data to find its way elsewhere, perhaps without your knowledge.
Deleting your genetic data from these platforms can be a surprisingly tricky process. Here’s how to navigate removing your spit sample and DNA data from the databases maintained by 23andMe, Ancestry, and Helix.
23andMe may keep your spit and data for up to a decade
- 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, you will be asked 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 23andMe 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
- 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 Ancestry 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.”
However, if you opted into Ancestry’s informed “Consent to Research” when you signed up, the company says it cannot wipe your genetic information from any “active or completed research projects.” But it will prevent your DNA from being used for new research.
To direct the company to discard your spit sample, you must call Member Services and request that they toss it.
Helix will toss your spit upon request, but can keep data ‘indefinitely’
The company also stores your saliva sample. You can request that your spit be destroyed by contacting Helix’s Customer Care. There, you’ll find a request form that looks similar to the one 23andMe uses.
- John Moore/Getty Images
- On Thursday, congressional representative Jackie Speier (D-CA) talked to 23andMe about possibility of using genetic testing to help reunite families separated at the border.
- The next day, 23andMe CEO Anne Wojcicki tweeted that the company had offered to “donate kits and resources to do the genetic testing to help reconnect children with their parents.”
- A 23andMe representative told Business Insider on Friday that the company is currently working on a plan, but details have not yet been finalized.
- There are several issues with tracking down family members via DNA testing, most of which involve privacy concerns.
The Trump administration has vowed to reunite the more than 2,300 migrant children and parents who’ve been forcibly separated as the result of the “zero-tolerance” policy enacted by the US Department of Homeland Security and Department of Justice.
But the logistical challenges of bringing families back together are only beginning to emerge. Because the cases of parents and children have been handled by separate agencies – and some parents have already been deported – reuniting kids with their parents is a dauntingly difficult and complex task.
Members of Congress are searching for potential solutions. On Thursday, Rep. Jackie Speier (D-CA) talked to 23andMe about the possibility of using genetic testing to help reunite families, BuzzFeed News reported.
The next day, 23andMe CEO Anne Wojcicki tweeted that the company had offered to donate some of its spit-in-a-tube DNA-testing kits, along with “resources to do the genetic testing,” to help families reconnect.
A 23andMe representative confirmed to Business Insider that the company is working on a plan for this, although “program details haven’t been finalized.”
To use DNA testing for this purpose, people would have to carefully collect spit samples, then send them to a certified lab to be tested and submitted to 23andMe’s database. It’s unclear what would happen after that, or what a system that uses genetic data to match these separated families might look like.
“We are waiting to see the best way to follow up and make it happen,” Wojcicki wrote in her tweet.
- Consumer genetics tests like 23andMe’s require you to submit samples of saliva.
- Hollis Johnson
Some experts have criticized the effort as unnecessary, however, suggesting that spreadsheets and photographs might be easier tools to accomplish the same goal.
“I find it astounding – astounding – that these families would have been separated in such a way that DNA would be required to reunite them,” Tom May, a professor of bioethics at the Hudson Alpha Insitute for Biotechnology, told Business Insider.
If genetics tests do wind up being used for this purpose, consumer privacy concerns may arise.
Once genetic data has been submitted to a database like those kept by 23andMe, Ancestry, or one of the other myriad companies providing these services, it is difficult and in some cases virtually impossible to delete. Some experts fear the data can be hacked, used in a discriminatory manner by insurance companies or employers, or used to locate other family members without their consent.
That is one of privacy experts’ main concerns about genetic data in general: that people beyond the individuals who choose to do a genetic test could be affected by its results. In the case of the Golden State Killer, for example, the suspect was tracked down using samples that a relative submitted to public genealogy database GEDmatch.
“You might be informed about the risks of doing a test like this, but other people might not,” May said.
Importantly, 23andMe is a private database, not a public one like GEDmatch. But private data was hacked last month at DNA testing and genealogy site MyHeritage, compromising the data of 92 million users.
May said that although he believes 23andMe’s offer to help unite families is well-intentioned, he hopes some ground rules will be established before the company gets involved.
“I think it would behoove [them] to supplement their good intentions by taking steps to make sure this travesty is not being used as a surreptitious way for authorities to enter individuals’ genetic information into a law-enforcement database,” May said. “I hope, therefore, that it is 23andMe’s intention to destroy this information after its use for this discrete purpose of reunification, and refuse to enter this into a database.”
- A spit sample for a DNA test.
- 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
- 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.
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
- 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.
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.
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
- 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.
- 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.
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.