sciencealert.com/23andme-has-sold-its-first-drug-based-on-its-consumer-s-personal-data
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For the past five years, the Silicon Valley ancestry company has been trying to leverage its gold mine of medical data to develop pharmaceuticals. This week, the firm sold its first pharmaceutical compound to Spanish drugmaker Almirall SA.
"This is a seminal moment for 23andMe," Emily Drabant Conley, vice president of business development, told Bloomberg.
"We've now gone from database to discovery to developing a drug."
Developed in-house, using consumer data, this potential treatment for inflammatory disease has once again prompted a sticky question: If the drug makes it to market, who should get a cut of the profits?
Today, around 10 million people worldwide have paid 23andMe to get their genetic data sequenced - sometimes up to US$199 a pop - and around 80 percent of those people agreed to let their anonymous information be used for drug research.
Under the company's terms and agreements, consumers are specifically told they "should not expect any financial benefit" or "intellectual property or similar rights in any research or commercial products". But some think that is neither fair nor right.
Currently, if 23andMe's new drug candidate makes it through human trials and ends up becoming a blockbuster drug for lupus or psoriasis, the enormous profits such a discovery could entail would never end up in the hands of the consumers.
Some patient advocates argue these contracts are deceiving, and that many consumers have no idea how profitable their personal information can be.
In 2016, Almiralll generated a total revenue of 859 million euros (957 million USD), and there are those who argue ancestry customers should also be paid for their contributions, and it wouldn't even affect 23andMe's bottom line.
Others disagree, however. They argue that consumers are clearly willing to give up personal profits for the greater good.
After all, 23andMe markets itself as a health company out to achieve global good. In fact, the drug compound it just licensed is designed to target a specific antibody that blocks a family of proteins associated with autoimmune conditions like lupus, Crohn's and inflammatory bowel disease.
"Working with Almirall, we're pleased to be furthering 23andMe's mission of helping people benefit from genetic insights," said Kenneth Hillan, head of therapeutics at 23andMe, in a statement.
"As a leader in medical dermatology, we felt Almirall was the best company to take this program forward and ultimately develop an effective therapy for patients."
But even though 23andMe is a health company, it is not bound by the same obligation to act in the interest of consumers as medical professionals are. As a result, many are suspicious of its motives, especially given recent scandals like the one with Theranos.
"You can't have it both ways," Megan Allyse, a health policy researcher at the Mayo Clinic, told Wired in 2018.
"That's why we have HIPAA, it's why we have all these regulations that say health information is privileged information that can't be commodified."
In other words, ancestry companies appear to sit in this grey area between profit and patient, making practical solutions that protect the consumer difficult to implement.
So difficult, in fact, that some think it's not worth making any changes at all, even as companies like 23andMe make huge leaps and bounds in their research and development, monetising on consumer data with each step.
"I would vote no on compensating these people," medical geneticist Robert Green told Fast Company in 2016.
"It would sew chaos."
For instance, would all consumers who volunteered their data get paid equally? What about those whose data was only used as a control?
And let's say we did start paying people for genetic information as opposed to the other way around - would that amount to corporate manipulation of the masses?
There's no easy answer to these sticky questions, and as genetic data becomes ever more profitable, the complexity and controversy is only going to grow.
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