- Samantha Lee/Business insider
- As Silicon Valley tech companies increasingly push into the realm of healthcare, outside experts and clinicians are raising red flags.
- In the cases of suicide prevention, genetic testing, and e-cigarettes, lives may hang in the balance.
- In the tech universe, much of the motivation for a new technology is wrapped up in its potential to disrupt existing markets.
- In healthcare, clinicians have to think about what could happen to someone after they use the tool they are given. The risk of harm is high.
- Visit Business Insider’s homepage for more stories.
When the Harvard psychiatrist and tech consultant John Torous learned that Facebook monitors its users’ posts for warning signs that they might be at risk of suicide, he was shocked.
Having grown accustomed to working with tech giants like Microsoft on scientific research, he wondered why he’d never heard about Facebook’s program. He was even more surprised to find out that as part of its efforts, Facebook was sending emergency responders to people’s homes.
Facebook’s monitoring tool has been running since 2017 and was involved in sending emergency responders to people more than 3,500 times as of last fall, the company said. But the reason Torous hadn’t heard of it is because the company hasn’t shared information about the tool with researchers such as him, or with the broader medical and scientific community.
Without that information, Torous said, big questions about Facebook’s suicide-monitoring tool are impossible to answer. Torous is worried the tool might home in on the wrong users, discourage frank discussions about mental health on the platform, or escalate, or even create, a mental-health crisis where there wasn’t one. In sum, Torous said Facebook’s use of the tool could be harming more people than it’s helping.
“We as the public are partaking in this grand experiment, but we don’t know if it’s useful or not,” Torous told Business Insider.
Facebook says the tool isn’t a health product or research initiative but more akin to calling for help if you see someone in trouble in a public space.
It is the latest example of a trend in Silicon Valley, where the barriers that separate tech from healthcare are crumbling. A growing array of products and services – think Apple Watch, Amazon’s Alexa, and even the latest meditation app – straddle the gap between health innovation and tech disruption. Clinicians see red flags. Tech leaders see revolution.
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Silicon Valley’s critics like to point to Theranos as a dramatic example of what can go wrong as a result of the breakdown. Bolstered by big investors, the secretive blood-testing startup reached a valuation of $9 billion, despite publishing little research showing its tech worked. When it was gradually revealed that the advanced technology required for its devices did not exist, the company and its founder, Elizabeth Holmes, toppled.
Clinicians and researchers interviewed for this article said that tech products and services could often be overhyped or even harmful, even if they couldn’t reach Theranos-level deception. They said the health claims that companies make frequently run ahead of the evidence – a problem when people’s health is on the line.
“There’s almost this implicit assumption that they play by a different set of rules,” Torous said.
Take Juul, which is now the top seller of e-cigarettes in the US. When the San Francisco company launched its high-nicotine vaping devices, it styled them as compatible with a healthy lifestyle. When Juul was then tied to a teen-vaping epidemic, experts called attention to Juul’s lack of published health research and its youthful launch campaign. Had Juul been required to rigorously study its e-cigarettes before flooding the market with them, the company might have avoided putting youth at risk, experts say.
Founded in 2006, 23andMe is one of the oldest Silicon Valley healthcare startups. The company has long portrayed its genetic tests as helping people take better control of their health by providing a snapshot of their risk of diseases like late-onset Alzheimer’s and cancer. In 2013, however, regulators forced the company to stop selling the tests on the grounds that they hadn’t proven their results to be accurate with published research.
Now, with limited regulatory sign-off and dozens of published studies, 23andMe is selling its health tests once again. Yet clinicians still call the reports subpar. These experts say the reports can mislead. They point out that although regulators have approved of them as medical tools, the bar for that threshold was significantly lowered recently. 23andMe, on the other hand, says its reports are empowering and touts regulators’ blessing.
‘The walls are breaking down fast’
- Some experts find 23andMe’s health reports concerning.
- Hollis Johnson/Business Insider
In the view of Laura Hercher, the director of research in human genetics at Sarah Lawrence College, tech companies and clinicians approach health problems from fundamentally different perspectives. Where tech tends to prioritize disruption and convenience, healthcare puts an emphasis on safety.
But the invisible barriers that once separated tech from health are deteriorating, she said. In the meantime, patients and consumers may suffer the consequences, other experts say.
“The walls are breaking down fast,” Hercher told Business Insider. “There’s going to be a lot to figure out as we go along.”
At Facebook, a health problem came to the company. Staff had known there was an issue since 2009, when a cluster of suicides occurred at two high schools near the company’s headquarters in Palo Alto. Then, things became personal. After the company rolled out a livestreaming tool called “Facebook Live” several people used it to livestream their suicides. First it was a 14-year-old girl and then a 33-year-old man, both in the US. Later, in the fall, a young man in Turkey broadcast himself taking his own life.
Facebook tasked its safety-and-security team with doing something about it.
The team spoke with experts at several suicide-prevention nonprofits, including Daniel Reidenberg, the founder of Save.org. Reidenberg told Business Insider that he helped Facebook create a solution by sharing his experiences, bringing in people who’d struggled personally with suicide, and having them share what helped them.
The result was Facebook’s suicide-monitoring algorithm, or, as the company calls it, its suicide-prevention algorithm. Using pattern-recognition technology, the tool identifies posts and livestreams that appear to express intents of suicide. It scans the text in a post, along with the comments on it, such as “Are you OK?” When a post is ranked as potentially suicidal, it is sent first to a content moderator and then to a trained staff member tasked with notifying emergency responders.
Clinicians and companies disagree on the definition of health research
Antigone Davis, Facebook’s global head of safety, told Business Insider that she likens the tool to crisis response and does not consider it health research. She said Facebook doesn’t store data on individuals related to what the algorithm detects about their suicide risk.
“The AI is working on the content, not on the individual,” Davis said.
It is unclear how well the tool works. Because of privacy issues, emergency responders can’t tell Facebook what happened at the scene of a potential suicide, Davis said. In other words, emergency responders can’t tell Facebook if they reached the scene too late to stop a death, showed up to the wrong place, or arrived only to learn there was no real problem.
Torous, a psychiatrist who’s familiar with the thorny issues in predicting suicide, is skeptical. He points to a review of 17 studies in which researchers analyzed 64 different suicide-prediction models and concluded that the models had almost no ability to successfully predict a suicide attempt.
“It’s one thing for an academic or a company to say this will or won’t work. But you’re not seeing any on-the-ground peer-reviewed evidence,” Torous said. “It’s concerning. It kind of has that Theranos feel.”
Reidenberg told Business Insider that he believes Facebook is doing good work in suicide, but because its efforts are in uncharted waters, he thinks everyday issues will arise with the tool. He disagrees with Torous’ view that the efforts are health research. “There isn’t any company that’s more forward-thinking in this area,” Reidenberg said.
Something that’s easier or prettier may not be good enough in healthcare
- When Pax Labs launched the Juul e-cigarette in 2015, the company had published no health research on the device.
- Melia Robinson/Business Insider
Juul has long presented itself as a health-tech company and is eager to show that its devices can improve the health of adult smokers. When it launched its e-cigarettes in 2015 with a party in New York City, Juul’s then-parent company, the tech startup Pax Labs, called the Juul “smoking evolved.”
Before the launch party, though – and for several years afterwards – neither Pax nor Juul published any real health research. Then, reports of a vaping epidemic among teens began to surface.
Meanwhile, clinicians and academics looked at Juul’s devices and saw a big problem: They had a handful of qualities that made them uniquely appealing to young people.
Even compared with other e-cigarettes, Juul devices contain very high levels of addictive nicotine, which may help adult smokers but which also appear to interfere with learning and memory in the still-developing teen brain, according to Suchitra Krishnan-Sarin, a professor of psychiatry at Yale’s center for nicotine and tobacco research. Juuls are also easier to hide and to use discretely, another quality that could be helpful for adults but especially harmful for teens, Krishan-Sarin said.
Other experts point to Juul’s 2015 ads – which depicted young models on flashy backgrounds – and Juul’s sweet flavors, such as crème brûlée and cool cucumber. They say both appealed uniquely to youth. Had the startup studied its devices before selling them, those problems may have been foreseeable, they say.
“The problem is Juul products just came onto the market without any regulation and without any controlled studies,” Krishnan-Sarin told Business Insider.
In a statement emailed to Business Insider, a Juul spokesperson said the company “exists to help adult smokers switch from combustible cigarettes, which remain the leading cause of preventable death around the world,” and added that Juul is now publishing research. The representative also said the company is committed to preventing youth access to its products and supports raising the national tobacco and vapor purchasing age to 21.
“We invite those who criticize us for launching in 2015 to talk to former smokers about the impact switching to Juul has had on their lives,” the spokesperson said.
Who are 23andMe’s genetic tests for?
Then there’s 23andMe, which rolled out the health and disease component of its genetic tests in 2013, before publishing research that showed the tests to be accurate, according to regulators at the US Food and Drug Administration. Today, the agency has approved of 23andMe’s products as medical tools, thanks in part to a less-stringent process introduced last year. In addition, the company has now published dozens of basic research papers. But clinicians say those things don’t mean the tests are safe.
Jeffrey Pollard, 23andMe’s director of medical affairs, told Business Insider that its tests are designed for healthy people who want to learn more about their genes and are not intended to meet the level of care designed for the clinic. He said the company is clear in how it communicates that to customers. Pollard also said 23andMe regularly engages with experts outside the company to ensure their products are up-to-date.
“I think it’s obvious that genetics and the tests we provide are quite impactful, and in that way, we deserve to be paid attention to and embraced,” he said.
But to Hercher, 23andMe’s reports are concerning for several reasons. One is that the tests don’t include counseling, a service that she and other experts see as critical to ensuring that people understand their results and their real risk of disease. Another is that they are not comprehensive because they only look at a select few genes involved in one’s risk of disease.
“Producing something that kind of works and is faster, cheaper, or easier isn’t always an adequate answer if it turns out to put some people at risk,” she said.
‘Move fast and break things’ versus ‘first, do no harm’
- Facebook CEO Mark Zuckerberg answered questions about privacy at a Senate committee last year.
- Chip Somodevilla/Getty Images
A decade ago, Facebook cofounder and CEO Mark Zuckerberg told Business Insider founder Henry Blodget that his prime directive to his team was to “move fast and break things.”
“Unless you are breaking stuff,” he said, “you are not moving fast enough.”
It has become the unofficial motto of Silicon Valley.
But experts including Torous say that mantra is at odds with medicine’s Hippocratic oath, in which doctors swear to “first, do no harm.”
In the cases of suicide prevention, genetic testing, and e-cigarettes, lives may hang in the balance. In the tech universe, much of the motivation for a new technology is wrapped up in its potential to disrupt existing markets. But in healthcare, clinicians have to think about what could happen to someone after they use the tool they are given.
Healthcare is an industry that requires particular caution because patients are often in a vulnerable position. They might be sick or facing an elevated risk of disease or death. The chance of causing harm is high.
Hercher and Torous said that academics and clinicians play by rules different from Silicon Valley’s.
“It’s not that we’re dealing with different fact sets – we have different obligations,” Hercher said. “We live in different universes.”
Academics are worried about vulnerable populations
- Hollis Johnson/Business Insider
Torous is worried that Facebook’s suicide-monitoring tool doesn’t work very well, especially based on what he’s seen published about other similar algorithms. He’s also concerned that it could cause problems by either identifying the wrong people, which would add stress to an already strained healthcare system and waste money, or by discouraging Facebook users from speaking frankly about their mental state with their peers.
“We know Facebook built it and they’re using it, but we don’t really know if it’s accurate, if it’s flagging the right or wrong people, or if it’s flagging things too early or too late,” Torous said.
Krishnan-Sarin and University of Southern California preventive-medicine professor Jessica Barrington-Trimis are concerned that even if Juul helps adult smokes, the products could hurt thousands of young people who wouldn’t have otherwise smoked by making them more likely to pick up a cigarette.
“We want smokers to quit. If you can provide them with a cleaner form of nicotine, that’s great. But many kids say they go through a whole pod in 24 hours. That’s very concerning. Nicotine is a neurotoxin to the adolescent brain,” Krishnan-Sarin said.
In a similar vein, Hercher and Ross are worried that people at a high risk of disease who take a 23andMe test could be harmed. Both of them said the tests are set up in a way that customers could believe that they’ve been screened for a serious disease such as cancer, for example, when in reality, they have not.
One case of this occurred in 2010 when an oncologist named Pamela Munster took a 23andMe breast cancer test and was relieved to learn she was negative, as the New York Times reported.
Two years later, Munster learned she had breast cancer. A more thorough clinical test revealed that indeed, she had a genetic mutation that had raised her risk of the disease. It was a mutation that 23andMe didn’t test for.
“It’s like you bring your car in for service and they say, ‘OK, we checked your rear right brake and it’s working,’” Hercher said. “If you think you’ve just had your car serviced, you’ve not been well informed.”
A developing playbook for health-tech startups: Publish more research
To John Ioannidis, an early Theranos skeptic and a professor of medicine at Stanford University, the time is ripe for another Theranos-like debacle in health tech. In January, he and a team of researchers published a study that suggests that of all the well-funded health-tech startups out there, very few are publishing scientific literature.
The answer to avoiding that problem is simple, he and his coauthors suggest: The startups need to start publishing results. “Startups are key purveyors of innovation: holding them to a minimum standard of evaluation is essential,” they wrote.
Peer-review research involves subjecting your work to a group of outside experts in the same field. Whether it’s a biotech company claiming its new therapy can cure cancer or a tech company that is trying to prevent suicide, those assertions can and should be measured and quantified, Ioannidis and his coauthors say.
Juul appears to have heeded Ioannidis’ call.
Starting this year, the company began to publish health research and told Business Insider last month that it was beefing up its research efforts with a team focused on doing more of that kind of work. Business Insider also exclusively reported that Juul is also exploring a digital-health offering that could complement its devices with an app or other smartphone-based tool designed to help smokers quit.
In addition, Juul has made over its image and done away with ads that outside experts said appealed to teens. Advertisements that featured young models on bright backgrounds have been swapped for images of adults with pops of gray in their hair. A neon online color scheme has shifted to muted hues of navy and gray. Flavors such as cool cucumber and crème brûlée have been shortened to cucumber and crème.
- Hollis Johnson/Business Insider
“We are committed to continuing to research the potential public health impact of our products and have over 100,000 participants enrolled in behavioral studies across the world,” the Juul spokesperson said.
In addition to publishing research, experts say startups need to place a clearer emphasis on safety and transparency. To do that, companies like 23andMe, Juul, and Facebook all need to think more about how their tools might impact potentially vulnerable people.
“There have to be quality controls, there has to be truthfulness,” Hercher said. “Is simply having good information enough? There has to be a line somewhere.”
Facebook maintains that its work in suicide does not fall under the domain of health, but instead is restricted to emergency response. It has not published any data on the algorithm.
As far as the world of genetic-testing is concerned, experts say it’s still something of a Wild West for customers, but a handful of companies are trying to address that. They hope to combine the convenience and simplicity of 23andMe with the thorough nature of a clinical experience.
Invitae, one startup, recently announced plans to roll out a test that, like 23andMe’s, could be ordered by consumers, only it would incorporate genetic counseling and require a doctor’s sign-off. Last month, another startup called Helix launched a comparable test that includes optional genetic counseling. And Color Genomics has long had a test that works similarly and links customers to genetic counselors over the phone.
“There’s some great science out there,” Ross said. “I want to see more of it.”
- Yulia Mayorova/Shutterstock
- Genealogy and DNA site Ancestry once partnered with Google’s stealthy life-extension spinoff, a company called Calico, to study the genetics of longevity.
- The new study suggests that our genes play less of a role in how long we live than previously believed.
- Instead, traits and behaviors that include everything from diet and exercise to friendliness appear to play a strong role in longevity.
- But surprisingly, we still pass these traits on through generations – mostly by picking partners who look and act like us, the researchers suggest.
The road to achieving a long life is littered with hype. The usual life-extension suspects include pricey pills and supplements; the peculiar involve infusions of young blood and chambers pumped with sub-zero temperatures.
Then there’s science. And one scientific factor that has long been presumed to dictate much of how long we live is our DNA. For decades, it was assumed that the genes we inherit from our parents explain anywhere from 15% to 30% of the variations in longevity that are observed between people.
But a new study that came from quiet collaboration between genetics company Ancestry and a Google life-extension spinoff called Calico suggests that our genes play less of a role in our lifespan than we thought.
Instead, traits and behaviors that include everything from diet and exercise to friendliness appears to play a strong role in longevity. Surprisingly, we still pass these traits on through generations – mostly by picking partners who look and act like us, the researchers report.
In essence, the findings suggest that people effectively transfer longevity from one generation to the next much in the same way that wealth and socioeconomic status are passed from parents to children: by choosing partners with attitudes and attributes that mirror our own, regardless of how different their DNA may be.
Picking partners who act and think like us
- seyfettin dincturk / Unsplash
For decades, researchers studying longevity and genetics had estimated that the genes we inherit from our parents play a significant role in determining how long we live. Previous studies suggested that genes account for as much as 30% of the total variability in lifespan between individuals.
But the new study from Ancestry and Calico indicates that our DNA may be much less important in determining longevity than traits and behaviors like diet, exercise, and personality. After looking at data from more than 54 million family trees and the birth and death information for over 400 million individuals, the researchers concluded that our DNA accounts for less than 10% of lifespan variability.
Instead, we pass on longevity through generations by choosing partners whose attitudes and attributes look much like our own. In research parlance, that’s known as “assortative mating.”
“The true heritability of human longevity for birth cohorts across the 1800s and early 1900s was well below 10%, and … has been generally overestimated due to the effect of assortative mating,” the scientists wrote.
Put another way, we tend to pick partners with attitudes and attributes – from eating and exercising to friendliness – that mirror our own. And as a result, we tend to live similar amounts of time, and have children who do as well.
How friendly we are and how often we work out may play a stronger role in our longevity than our DNA
Previous studies shed light on how important lifestyle factors are when it comes to how long we live. In a recent study published in the journal Circulation, for example, scientists pinpointed five lifestyle factors that appear to be linked with a significantly longer lifespan, judging by the outcomes of two long-term studies that involved about 123,000 adults.
People in the study who lived long lives tended to:
- Do at least 30 minutes of cardio exercise every day.
- Eat a Mediterranean diet.
- Never smoke.
- Stick to a healthy body weight.
- Drink no more than 1-2 alcoholic beverages a day.
As part of several other recent studies, scientists have uncovered a handful of personality traits that also appear to be strongly linked to longer-than-average lives. They include:
Taken together, the findings suggest that how long we live may be less a matter of what we’re born with than the circumstances in which we live and the choices that we make. Those choices, as the Ancestry and Google researchers acknowledge in their new paper, tend to be based on everything from social status to wealth and then, just like genetics, passed on from one generation to the next.
- 23andMe Co-Founder and CEO Anne Wojcicki
- Steve Jennings/Getty Images for TechCrunch
- Anne Wojcicki, the CEO and founder of Silicon Valley’s most popular genetics testing startup, 23andMe, said this week that she hopes the company expands its current health offering lineup.
- 23andMe, which made headlines recently on the heels of a new $300-million partnership with drug giant GlaxoSmithKline, currently offers health screenings for some of the genes involved in breast cancer, Alzheimer’s, and Parkinson’s.
- On Tuesday, Wojcicki said she hopes to add a new health offering that looks at how you process medications including those for depression.
- Albertsons pharmacies and gene testing startup Color Genomics currently offer that kind of test for $250-$750, but many scientists say it’s not worth the money.
Anne Wojcicki, the CEO and founder of popular Silicon Valley gene testing company 23andMe, doesn’t feel like the company is currently offering what she called a “complete product.”
That’s because the current gene testing kit – which includes health screenings for some of the genes involved in Alzheimer’s, Parkinson’s, and breast cancer – does not include a test that looks at how you process medications including those for depression.
Those DNA tests, which assess genes involved in the break down of antidepressants in the body, are currently being offered by psychiatrists and Albertsons pharmacists in three major cities at a hefty price tag of $750. Just last month, another Silicon Valley genetics testing startup called Color Genomics began offering the test as part of its $250 kits.
And on Tuesday at a conference organized by Rock Health, one of Silicon Valley’s premier health-tech funding groups, Wojcicki said she hoped her company could include that kind of test in its product lineup soon.
But many scientists feel the tests don’t offer a clear benefit to people and in some cases are not worth the money. Among other issues, the tests may give conflicting results to the same patient for the same medication and don’t tell providers which specific medication is best, according to experts.
‘When we can bring pharmacogenomics back, then we have a complete product back’
- Lydia Ramsey/Business Insider
In the early days of 23andMe, the company included a test for depression medications in its lineup of health offerings, Wojcicki said. But in 2013, the Food and Drug Administration forced the company to stop selling those products and get federal approval on the grounds that the tests could be misinterpreted as health advice. The company was allowed to continue selling the genealogy component of its kit, which looks at ancestry.
Last year, the FDA gave the company the green light to again sell some of its health screenings. On the heels of that decision, 23andMe rolled out a limited selection of some of its original products. The most recent addition, unveiled in March, is a test for some of the genes involved in the risk of developing breast cancer, also known as BRCA genes.
Now, the company is only missing one of those original health products, Wojcicki said: a test for depression medications, also called pharmacogenomics.
“The only one we don’t have back yet is pharmacogenomics. We used to have that and we’d like to have that one come back,” Wojcicki said on Tuesday at a panel discussion at the Rock Health Summit in San Francisco.
“When we can bring pharmacogenomics back, then we have a complete product back,” she said.
It remains to be seen how the company would roll out such a test. Because 23andMe sells its tests directly to people (they can be purchased online and at a selection of drug stores), it would need to get FDA approval before selling an additional health product. The test could be incorporated into the existing health lineup, which currently includes tests for Alzheimer’s, Parkinson’s, and breast cancer for $199, or it could be sold as a stand-alone test.
Color Genomics chose to incorporate its new pharmacogenomics product into its existing $250 test. Unlike 23andMe, which sells its services directly to consumers, Color requires people to order their tests through a medical provider. In addition, the company mandates talking with a professional genetics counselor and a clinical pharmacist to avoid potentially dangerous misinterpretations of the results.
Genomind and Assurex, the two companies who offer a standalone pharmacogenomics product, sell the test through psychiatrists and some pharmacists for $750.
Wojcicki did not provide further details on how much the test – should the company ultimately choose to offer it – would cost or when it would be available. A company representative also declined to offer Business Insider more information about the test. But Wojcicki said she saw the pharmacogenomics service as part of the company’s overall mission to help empower customers with more data about themselves and prevent negative health outcomes when possible.
“I think one thing genetics can do is help prevent a lot of early deaths,” Wojcicki said.
- 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.