From Home DNA Tests to Big Pharma

There’s big money in genomic data, but where is it going?

Genetic tests generally don’t pose any physical risks. Send some hair, swab your inner cheek or spit in a tube and find out if you’re part Viking, Cherokee, or West African and get some data that can help your doctors diagnose and treat you more efficiently and effectively than ever before. Despite the fact that you feel like a paying customer, you’re really paying to be a data supplier – the real customer is Big Pharma.

Over the years, these DIY kits have become especially popular. We all love learning a little more about ourselves—whether that’s through reading horoscopes, taking the Myers-Briggs, or learning if you’re a Hufflepuff. It’s not surprising that 23andMe and ramp up their ads around the holidays, after all churning out genomic data is BIG business. We can all agree that using DNA data to advance scientific discovery and improve medical care is a good thing, but how else is our data is being used is perplexing -think those questionable DNA-inspired playlists on Spotify.

It’s interesting though, that where it’s widely considered a dumb idea to give your social security number or PIN to a stranger, many  consumers don’t think twice about sending their biological markers to private companies who then sell them and resell them to the highest bidder.

For most consumers genetic testing is seen as entertainment first, and a way to identify and mitigate the risk of developing a serious illness later on, second. But, the obvious appeal to our innate curiosity isn’t the only way big companies are profiting from DNA tests.

The Value of Genetic Data

Aside from the boom in DNA testing, the data present in all of these tests is extremely valuable.

Grand View Research predicts that the DNA testing market size is to reach 10.04 billion dollars by 2022 and $27.6 billion dollars by 2025. When you send along your DNA, you’re giving away something with a lot of valuable data. DNA can’t tell you everything about a person, but it does provide some pretty personal information about someone’s health, detecting relatives and relationships with those relatives, and so on.

23andMe, for example, has managed to collect DNA information from about five million people, and much in the way that Facebook monetizes your likes, clicks, and behaviors, the DNA testing company has sold genetic information to multiple drug companies. Genentech, for example, paid $10 million to look at the genes of people with Parkinson’s disease. More recently, GlaxoSmithKline did a deal for $300 million giving them exclusive access to 23andMe’s database.

And while it seems like a good idea to capitalize on human interest to collect data and use it for drug research, the way that these DNA testing companies treat personal data as a commodity to be bought and sold without a hint of remuneration for the data owner and provider is bit disturbing. What people don’t realize is, they’re paying the testing company for this personal information, and the testing company is making more from selling the data then they are for generating the data.

The GSK Deal and The Murky Ethics of For-Profit Studies

In July 2018, GlaxoSmithKline announced a $300 million deal with 23andMe granting four years of exclusive access to 23andMe’s database. The goal of the investment is, GSK will gain insights from the 23andMe genetic database, and as such, they’ll be better equipped to develop drugs by studying “disease-relevant” genes. By paying for exclusivity, they also gave themselves a 4 year head start on every other pharmacogenomic lab in the world.  Locking the rest of the scientific and medical research community out of one the largest repositories of genomic data in the world, is hardly good for science, medicine or humankind.

While the GSK deal is the latest partnership between DNA testing companies and pharmaceutical behemoths, it’s hardly the first.

Back in 2015, 23andMe joined forces with Genentech to use the genome to develop drugs for people with Parkinson’s disease. This deal was the first of ten–and the DNA testing company also published studies from GSK, Pfizer, and Janssen.

And it’s not just 23andMe and Ancestry, Icelandic genetic testing company, deCODE sequenced roughly half of the country’s adult population to link genes with specific diseases.

Amgen first acquired deCODE, and later, Chinese pharmaceutical company, WuXi.

Additionally, companies like Biogen, Pfizer, and others are paying big bucks to sequence the genes from the UK-based Biobank. This year-long arrangement would grant researchers access to genetic data from 500k participants.

Genes Are Valuable, But What’s Fair to Consumers?

The goal with these myriad partnerships is noble–to some extent. The aim is to study these datasets to uncover more about diseases and conditions ranging from breast cancer and Parkinson’s disease to things like diabetes and high cholesterol.  

In the case of the latter, scientists looked toward a gene called PCSK9. This gene was found accidentally by Texas researchers when studying the differences between people with abnormally high and abnormally low cholesterol levels.

Naturally, drug companies were eager to find ways to target PCSK9 as a means of lowering cholesterol. While instances like this show some promise for genomic medicine, the drugs resulting from the PCSK9 haven’t gained much traction in the pharmaceutical market, likely due to high costs.

EncrypGen believes that sharing de-identified genomic data is the key to accelerating the advancement of medical research and genomic science. Because, security, control, consent and profiting from your data are at the core of what we do—we built the Gene-Chain Marketplace on our own blockchain, to keep transactions secure and  empower consumers, as much as the researchers developing new drugs.
Learn more about EncrypGen by joining the EncrypGen community on Telegram at Take back control of your genomic data, and benefit from the profit potential, by creating a Gene-Chain a profile here.