Why you shouldn’t give your genetic data to 23andMe

Man in a lab coat holds a test tube next to a microscope

Writer: Becca Muir
Editor: Elly Chaw
Art: Mazeda Khanam

Have you analysed your DNA? Although this might have been a weird question to ask a few years ago, in 2019 it would be unusual if you didn’t know at least one person who has bought a direct-to-consumer genetic testing kit.

What purpose do these DNA kits serve? Health is an aspect of the service, where you can find out your risk for certain diseases based on whether you carry a rare variant or not. However, as the health tests included are not particularly insightful, there is a reason to suspect that this isn’t why the tests are so popular.

Genetic testing has become another way of finding out the truth about who you really are.  The test delves into your DNA to help you discover your ancestors, connect with long lost relatives, and could even be adapted by third parties to help you make daily decisions such as what type of sushi you should eat.

We live in the age of Buzzfeed quizzes and Myers Briggs personality types, so it is unsurprising that these kits are popular. In an unpredictable world where the key demographic for quizzes and tests are facing economic and political uncertainty, genetic testing has honed into the very human urge to create order out of chaos. These companies have convinced us that these tests are just another way of becoming informed about our identity and that this is a pretty harmless activity, akin to finding out which Disney princess you are based on your favourite snacks.

But there is more to these tests than what meets the public gaze. It turns out that we’re sharing much more than previously thought, and that the potential for our data to be abused is something which is only beginning to be questioned.

The dramatic increase in data has transformed the power of genetic testing. This is because when you share that saliva, you’re adding to a big collection of saliva samples owned by only four companies, containing the genetic information of 26 million people across the world. It is really hard to overstate how much information that is. It is the biggest biobank in the whole world, and of all human history. For comparison, the UK’s highly commended biobank only has genetic information on 500,000 people at best. It’s so huge, that if this was an academic study, it undoubtedly would be one of the most expensive, time-consuming, and laborious studies ever accomplished in biomedicine.

In contrast though, this whole enterprise has been rapid, and very cheap. In fact, these companies are making a profit. Not only are people giving up their data readily, but they are also paying for the privilege. However, the profit coming from the consumer was never the point. The main profit-making part comes after: when our biobank data is sold.

Of course, theoretically, there could be positives to sharing the data in these databases.  We can’t just automatically assume that capitalism-fueled progress is the slippery slope leading to the plot of GATTACA. No one can argue that medical progress is a bad thing. The question is, can we trust that these companies have pure intentions?

We can look back at the history of genomics to understand why we really should not trust them at all. In the early 2000s, the race to sequence the human genome saw Craig Venter try to patent over 6500 gene sequences. This move would have made it so anyone wanting access to the genetic code would have to pay-for-gene through his company, essentially holding the entirety of progress in the academic biosciences ransom to the whims and questionable ethics of a capitalist tycoon. The only reason that Venter did not succeed is because President Clinton announced that genes could not be patented.  So, straight off the bat, the biotech industry has tried to commodify all of the available code to human life itself.

Today, not only are our world leaders too dangerously apathetic about science to regulate properly, but they also just don’t grasp the magnitude of technological change.  This is not just because their genetic literacy is, at best, at the level of a 19th century white supremacist. There is a deeper issue reflecting our lack of understanding about the omnipotent power of Big Tech. As James Bridle, author of The New Dark Age warns, we have a “simple-minded acceptance of technology as a value-neutral tool, one to be freely employed for our own betterment”.

But the problem is that these tests place medicine into the hands of companies who ultimately care about profits, not the enhancement of human health. So, even when companies promise miracle cures for cancer, this is not the main motivation behind gathering your data. It never was. The purpose is to make money, at any expense.

The monetisation of your genetic data reflects the wider trend of surveillance capitalism, where your personal life and intimate details are seen as extractable capital which can be sold to whoever pays the price. As we have already seen, countries such as Canada are using ancestry companies to deport people, and the US government will happily give your SNPs to the FBI to “help catch bad guys”.

If this seems bad, try to not think about how terrifying it is that the big pharma company GSK, who can receive $3 billion worth of fines for bribing doctors and still remain a FTSE 100 Giant, has now been granted at least 4 years of access to 23andme data.

It’s dark. We need to realise that capitalism has left a monstrous mark on genomics since its inception, and will continue to do so until we stop letting companies sell us as products. Until then, sticking to the Disney Princess Buzzfeed quizzes might be for the best.

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