When I walked into a cold doctors office at Nottingham City hospital early in October 2017, I wasn’t thinking very straight at all. At the second time of asking we had been given a place in a project that would sequence mine, my wife and my daughters entire DNA to find errors. Lucie was already seven, and after a couple of false starts, we were still pushing to find a reason for her disability. The 100,000 genome project promised to find the expected error in one of Lucie genes and report back in 1-2 years.
It wasn’t until reading the March edition of Wired that my eyes came across the words 100,000 genomes project and “broad consent” that my preverbal ears pricked up. Almost three years later, and mere days after receiving the results, was the first time I had even thought about where and who I had given my data to. But it’s not data, it’s me, who exactly now held a copy of the building blocks of me? The fact that the very essence as a person is recorded by someone else is chilling, but do I have any idea who that someone is and where it will go?
I signed a whole heap of consent forms before giving blood. They have an excellent website that tells me a load of information about the different levels of consent. Not once have I considered this until now, I mean how on earth can you be expected to understand what you agree to when dangled the carrot of diagnosis.
I am in no way saying that I was pushed into giving my consent, but I wasn’t in a position to understand what giving consent meant in this situation. Never mind about considering its ramifications as to who had access to my genetic data. I wanted answers to my daughter’s problems. All the consent boxes were explained to me as well as they could be by a nurse, but the reality is if they had said it came at the cost of 10 spam emails a day and two house visits every other Sunday I would have still signed on the dotted line.
Much like a person applying for a loan that felt compelled to take out PPI insurance - I wanted access to the possible results, more than I worried about what me signing in a whole booklet of content forms meant.
Of course, because this is a very modern problem, only in recent years have we even raised the question of our data being used, never mind our health information. Tech firms have spoilt even the word personal data, tarnished the price of giving consent, and levelled un-needed stress on the terms “approved third parties”.
The Building Blocks Of Me
The NHS has now sequenced my entire DNA and is keeping this on file, along with almost everything else I can imagine. They can make a pretty good guess at what will become of me when I’m old, what drugs will work best on me and a bucket load of other things I don’t understand. In 1990 this would have been the best situation imaginable. An agency tasked with looking after me knows everything about me and can treat me better; it is a perfect dream.
In 2020, we live in a world of corporations being given access to health data by the NHS. Others gaining it through promises of how much of your DNA comes from obscure places and then using it for their gain, and a whole range of issues going on surrounding almost everything we are as a person. Health data doesn’t feel like personal data; it doesn’t feel like it matters in the same way that a tech firm can see all my pictures of cats, or know how many times I dismiss my wife’s phones calls. It feels very unimportant and at the same time, the most crucial thing in the world.
I am not overly distressed if Apple knows that I went for four ruins this week, and what my average heart rate is. However, I am uncomfortable with Amazon knowing that one drug works best on me than another version and that I am likely to get prostate cancer before I’m 70. Even when data is anonymised, it doesn’t take many data points to make it relevant again.
What I need to make clear is that at no point does this project sell or give my data to Amazon, I am talking in broad strokes here. The fact remains that given the same situation again, I would not change anything. We gained a massive benefit from taking part. One that I would put up with years of spam emails and telephone calls in exchange. The real outcry is that I shouldn’t even have to think about this.
Technology firms have stollen our data, or at the very least been less than transparent in its harvesting. They have ruined my trust in giving consent to anyone. Even dealing with an organisation such as the NHS, that aims to offer a vast range of benefits, I am still looking for the catch. For the revenue stream that makes me their product.
Firms will continue to ruin experiences for those that are asking for legal consent such as the 100,000 genomes project because of the connotations now surrounding data collection. They may even stop organisations in their tracks because of the hurdles involved - yet they still carry on regardless. They are tamely regulated, unapologetic brazen and impossibly huge to comprehend. Our data will never be our data in the future, and the biggest loser is already us.