When I was asked to write this column on genetic sequencing of DNA, I thought that sending your DNA for testing with Ancestry Inc., or with 23andMe Inc. was rather innocuous. Surely there was no problem to take a peek at your ancestral heritage? Two years ago my sons gave me Ancestry Inc’s testing kit as a Christmas present and a few week’s later I received an interesting analysis that confirmed what my parents had told me about our family history.
But when I started to study these two companies for this column I found stuff which is clearly a big cause for concern… Neither of these companies are altruistic. They play on people’s curiosity to know more about their ancestors and possible far flung other family members. But this is an innocent-looking way for these two big companies to collect a huge amount data that they can then sell.
It is all smoke and mirrors. Ancestry Inc. was set up by a group of Mormons from Utah who wanted to be sure about their ancestors. They later sold the company to various private equity companies, until Blackstone, one of the world’s biggest private equity investors, bought a controlling interest in the company. Blackstone did not buy the company to sell testing kits for €40 a piece! They have other plans to make a killing…
23andMe Inc., the other company pushing genetic sequencing, was created by Anne E. Wojcicki, a great speaker, who tells us that she cried when she had to sack some of her staff because they were “like her own family”! She was married to the founder of Google and surely does not have to worry too much about her bank account. Like Ancestry Inc., they are selling consumers testing kits and that too is not a great business at €100 a piece.
The real business for both companies is that they are collecting huge amount of data which they can sell to healthcare and pharmaceutical companies.
It explains why Blackstone is such a keen investor to pay more than €4 billion for Ancestry Inc, and why GlaxoSmithKline announced an investment of $300 million in 23andMe for using the DNA company’s anonymised customer data for drug research! Some media outlets have also suggested that Google and Microsoft have an interest in “sharing” in this data money feast. Finding new vaccines, treatments and cures for genetically identified ailments can be a really profitable business, and we can ask ourselves if this activity should be dominated by a cartel of Big Pharma or Big Tech? One 23andMe board member has said in 2013, “Once you have the data, (the company) does actually become the Google of personalized health care.”
There is nothing wrong with what these companies collecting your data for finding long lost cousins and aunts, but selling the same data for highly profitable medical solutions needs to be regulated to stop cartels and the misuse of private data.
The companies claim that sample donors are giving an “informed consent”. But do not bother spending too much time looking at the Privacy and Donor Contract you “Accept” when you send in the samples. The legal language is so complex and subject to US law and Irish law. I gave up after 30 minutes and I have a legal education… Do not believe the statement that, “We do not sell your data to third parties or share it with researchers without your consent.”
In fact, nothing really stops the companies from “sharing” your data for huge profits – there are few laws that restrict them, and they have more lawyers than you could ever afford.
Genetic sequencing has become a big business with 7 billion people on the planet. Testing has become cheap and easy, and healthcare and pharmaceutical companies can make a killing from using this data to find new products to treat and cure patients. Testing is important because some of our genes determine if you are more susceptible to diabetes, cancers, heart diseases, and many other ailments and debilitating conditions. Every one of us will get ill many times during our lives and healthcare already accounts for a huge slice of our income paid out as taxes, as health insurance, or as a direct cost for medical care and prescribed medicines.
But testing also has risks for donors. It could become public as the result of a security breach when data is inadvertently published or stolen by hackers. When researchers could publish results your data could be identified by third parties. In some countries insurance companies are forbidden from using sequencing data to select clients, and job-seekers are normally protected by privacy laws too, but please show me a data base that is really protected from prying eyes! Not one bank or government has stopped a determined hacker so far from finding a backdoor into their protected servers, and many private insurance companies would love to be able to select the “Bold and Beautiful”. Just glance at those Apple, Fitbit and other smartwatches – where is all that health data ending up?
So my conclusion is that testing for medical purposes requires robust regulation. It is better to regulate than wait for private monopolies to dominate healthcare based on genetic testing. In the meantime DNA testing for ancestral reasons should be restricted to just that.
This article by Nicholas Anderson was first published in Swedish in “Forum för ekonomi och teknik” in November 2020.