- Eric Lefkofsky, chief executive officer of biotechnology company Tempus, arrives for a morning session of the annual Allen & Company Sun Valley Conference, July 11, 2018 in Sun Valley, Idaho.
- Drew Angerer/Getty Images
- Tempus, a technology company started by Groupon founder Eric Lefkofsky, just raised $110 million at a $2 billion valuation.
- The three-year-old Chicago-based company pulls together data on cancer patients on its platform, including genetic data from tumors and clinical data about how a patient is responding to treatment.
- The company plans to use the funding to expand its platform into other therapeutic areas.
A startup that aims to make treating diseases more personalized just raised another $110 million.
Tempus, which was started by Groupon founder Eric Lefkofsky, aims to use data to find better cancer treatments for patients, using both clinical data – information about which medications patients have taken and how they responded to them – and genetic data from the tumors of cancer patients.
The company announced on Wednesday that it has raised $110 million at a $2 billion valuation, bringing its total funding to $320 million. In 2018 alone, the company has raised $190 million.
The funding came from investors including Baillie Gifford, T. Rowe Price, Revolution Growth, New Enterprise Associates, and previous investors in the company.
Chicago-based Tempus got its start in 2015, and in the last three years has rocketed into unicorn territory. The startup runs a lab that’s able to sequence tumor genetics to see what mutations could be impacting an individual’s cancer. At the same time, Tempus sorts through clinical data from doctors, hospitals, and studies to standardize the information and analyze for patterns.
It’s similar to the work of two other prominent companies that were both recently acquired by pharma giant Roche: Flatiron Health, which focuses on collecting clinical data about cancer, and Foundation Medicine, which is centered around cancer genetics.
Tempus said in a press release that the new funding would be used to expand its technology into new treatment areas beyond cancer, as well as to grow geographically. Tempus said its platform currently reaches one of every four cancer patients in the US.
- 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
- 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.