The pharmaceutical giant GlaxoSmithKline announced a move late last month to invest $300 million in the genetic testing company 23andMe, in addition to a deal giving exclusive access to its collection of genetic data from its some 5 million customers, which represents the world’s largest human genetic database. The company will use the data to develop new drugs, taking advantage of the large dataset to find mutations that could offer targets for medications, according to The Atlantic. The announcement has sparked criticism over privacy concerns and the ethics of this use of customer data.
Genomic medicine represents an increasingly popular approach to drug development. When researchers inadvertently discovered the PCSK9 gene, linked to high cholesterol, it led drug companies to new targets for drugs to act on. 23andMe’s first partnership with a drug company, in 2015, was focused on genetic research on Parkinson’s Disease. The first project of the new partnership will focus on the LRRK2 gene, which has been linked to genetic vulnerability to Parkinson’s. While so far, these genomic drugs have been criticized for their high cost relative to their effectiveness, many believe this kind of research represents the next frontier in pharmaceuticals.
The new, four-year deal with give GlaxoSmithKline exclusive rights to drugs developed using this data. Speaking to Gizmodo, a 23andMe spokesperson said the investment was separate from the research agreement.
A statement from 23andMe founder and CEO Anne Wojcicki said:
“By working with GSK, we believe we will accelerate the development of breakthroughs. Our genetic research—powered by millions of customers who have agreed to contribute—combined with GSK’s expertise in drug discovery and development, gives us the best chance for success.”
And most customers, about 80 percent of them, have indeed agreed to participate in such ventures. Data from those that have opted out will not be included in the research. The data will be aggregated and anonymized before it is given to GlaxoSmithKline, although 23andMe admits it is unable to “provide a 100 percent guarantee that your data will be safe” given the possibility of a data breach.
Medical research has been a longstanding objective of 23andMe, which has shared insights from their data with not only GlaxoSmithKline, but six other pharmaceutical and biotech companies, for the last three and a half years. For many, their plans to contribute to medical research were one of the main selling points of 23andMe’s genetic testing kits.
But nonetheless, the deal has ignited criticism among consumers, for two primary reasons. First is the concern over privacy given risk of a data-breach, and secondly, concern over the ethics of the GlaxoSmithKline deal itself.
The context is certainly part of the problem. Public trust of Silicon Valley tech giants is at an all-time low, particularly when it comes to handling of personal data. And what’s more personal than DNA?
A series of high-profile data breaches and privacy scandals have companies facing more scrutiny than ever before when it comes to their handling of big data. Many of these scandals have revolved around the practice of selling these huge sets of data to advertisers and other companies. Data from as many as 87 million users was affected by Facebook’s Cambridge Analytica scandal, and used by a political consultancy that helped to advise Trump’s 2016 campaign. New regulations, chiefly Europe’s GDPR, which is effectively changing the privacy landscape worldwide, have been put in place in the wake of these scandals.
So some of the backlash against the deal comes from a fear that genetic data is equally vulnerable to breaches and improper handling as personal data like credit card information. So far, these companies have been unable to provide the kind of guarantees that would alleviate these fears.
And while customers can opt out of future studies that begin more than 30 days later, it’s not possible to remove the data from studies that are already in progress, as Bloomberg reporter Kristen Brown learned from her own attempts. 23andMe also can legally change the terms of these privacy agreements, unilaterally, at any time, according to Wired.
Pharmaceutical giants have themselves earned the distrust of the American public in recent years, over price gouging, their role in the opioid epidemic, and their payments to the same doctors responsible for prescribing their drugs. So it’s really unsurprising that a deal in which a Silicon Valley tech company is selling genetic data to a pharmaceutical giant might raise fears over the safety, and anonymity of, the data.
But criticism has also surrounded the ethics of the deal itself. 23andMe is, in effect, asking people to pay to allow the company to sell their data, quite profitably, to another company that will also profit from it. In the past, medical research using 23andMe’s data has largely been by publicly funded and nonprofit organizations like the National Institutes for Health.
As Peter Pitts, Center for Medicine in the Public Interest president, said to NBC News:
“It’s one thing for NIH to ask people to donate their genome sequences for the higher good. But when two for-profit companies enter into an agreement where the jewel in the crown is your gene sequence and you are actually paying for the privilege of participating, I think that’s upside-down.”
Pitts added, speaking to Time Magazine:
“If your data is going to be used for commercial purposes, you should be compensated for that. At minimum, you should be refunded any money you paid to 23andMe to have your genetic test done in the first place.”
Another problem with asking people to pay for this privilege is that the genetic data used in drug development will be skewed to represent the upper and middle-class groups that can afford to send the company their data. Already, almost 80 percent of people participating in scientific studies of the relationship between genetics and disease have European industry. The company has made some efforts to offer free testing for underrepresented groups, but for now, this is still a huge problem with relying on a for-profit enterprise for this data.
The fact is, both the tech and pharmaceutical industries have a questionable ethical track record, with the effort to make a profit often trumping the best interests of their customers, as well as society at large. A collaboration between the two rightly raises concerns. Technology has allowed the collection of massive datasets that raise ethical questions that have never needed to be answered before. Perhaps it is worth answering these questions before moving forward. Without regulations in place ensuring socially responsible practices in both these industries, when it comes to privacy specifically and ethics in general, suspicion of deals such as this is very much warranted.