- 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.
- 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.”
Maybe you got one of those find-your-ancestry kits over the holidays. You’ve sent off your awkwardly collected saliva sample, and you’re awaiting your results.
If your experience is anything like that of me and my mum, you may find surprises – not the dramatic “switched at birth” kind, but results that are really different from what you expected.
My mum, Carmen Grayson, taught history for 45 years – secondary school and university – retiring from Hampton University, Virginia, United States, in the late 1990s.
But retired history professors never really retire, so she has been researching her family’s migrations, through both paper records and now a DNA test.
Her father was French Canadian, and her mother (my namesake, Gisella D’Appollonia) was born of Italian parents who moved to Canada about a decade before my grandmother was born in 1909.
Last fall, we sent away to get our DNA tested by Helix, the company that works with National Geographic. Mum’s results: 31% from Italy and Southern Europe. That made sense because of her Italian mother.
But my Helix results didn’t even have an “Italy and Southern European” category.
How could I have 50% of Mom’s DNA and not have any Italian? We do look alike, and she says there is little chance I was switched at birth with someone else.
We decided to get a second opinion and sent away to another company, 23andMe. We opened our results together and were just as surprised.
This time, I at least had a category for southern Europe. But Mum came back as 25% southern European, me only 6%.
And the Italian? Mum had 11.3% to my 1.6%. So maybe the first test wasn’t wrong.
But how could I have an Italian grandmother and almost no Italian genes?
To answer this question, mum and I drove up to Baltimore to visit Dr Aravinda Chakravarti of the Johns Hopkins University School of Medicine and the Bloomberg School of Public Health, who has spent his career studying genetics and human health.
“That’s surprising,” he told us when we showed him the results. “But it may still be in the limits of error that these methods have.”
The science for analysing one’s genome is good, Dr Chakravarti said. But the ways the companies analyse the genes leave lots of room for interpretation.
So, he said, these tests “would be most accurate at the level of continental origins, and as you go to higher and higher resolution, they would become less and less accurate”.
As in my case, the results got me to Europe, just not Italy. My 23andMe test also showed less than 1% of South Asian, Sub-Saharan African, and East Asian and Native American.
This, Dr Chakravarti said, is likely true because the genetics of people on a continental level are so different, and it’s not likely that South Asian will look like European.
“Resolving a difference between, say, an African genome and an East Asian genome would be easy,” he said. “But resolving that same difference between one part of East Asia and another part of East Asia is much more difficult.”
I also learned that even though I got half of my genes from mum, they may not mirror hers.
As mother and daughter, Carmen Grayson (left) and Gisele thought their DNA ancestry tests would be very similar. Boy, were they surprised. — TNS
We do inherit our genes – 50% from each parent. But Elissa Levin, a genetic counsellor and the director of policy and clinical affairs of Helix, says a process called recombination means that each egg and each sperm carries a different mix of a parent’s genes.
“When we talk about the 50% that gets inherited from mum, there’s a chance that you have a recombination that just gave you more of the northwest European part than the Italian part of your mum’s ancestry DNA,” she said.
That is also why siblings can have different ancestry results.
The companies compare customers’ DNA samples to samples they have from people around the world who have lived in a certain area for generations.
The samples come from some databases to which all scientists have access, and the companies may also collect their own.
“We’re able to look at, what are the specific markers, what are the specific segments of DNA that we’re looking at that help us to identify, ‘Those people are from this part of northern Europe or southern Europe or South-East Asia’,” Levin said.
As the companies collect more samples, their understanding of markers of people of a particular heritage should become more precise.
But for now, the smaller the percentage of a population within a continent that is in the database, the less certain they are. Helix chooses not to report some of those smaller percentages, Levin said.
23andMe reports results with a 50% confidence interval – they’re 50% sure their geographic placement is correct.
Move the setting up to 90% confidence, meaning your placement in a region is 90% certain, and that small 1.6% of my ancestry that is Italian disappears.
The ancestry tests also have to take into account the fact that humans have been migrating for millennia, mixing DNA along the way.
To contend with that, the companies’ analyses involve some “random chance”, as Levin put it. A computer has to make a decision.
And the ancestry companies have to make judgment calls. Robin Smith, a senior product manager with 23andMe, said their computers compare the DNA with 31 groups.
“Let’s say a piece of your DNA looks most like British and Irish, but it also looks a little bit like French-German,” he said. “Based on some statistical measures, we’d decide whether to call that as British-Irish or French-German, or maybe we go up one level and call it northwestern European.”
What does he think explains my case?
“It was a bit surprising,” he said. “But in looking at the fact that you have some southern European and some French-German, the picture became a little clearer to me.”
So, for now, my Italian grandmother doesn’t show up in these tests.
No matter – Dr Chakravarti, Levin and Smith all say to let the results add to your life story. The DNA is just a piece of what makes you, you. – Kaiser Health News/Tribune News Service