One of the ongoing debates in the UK regarding Brexit is the argument over whether or not those voting knew what they were voting for. The argument goes that while the high level “do you want to leave the EU? Yes/No” question was clear, the details about what that meant was unknown. And while during the campaigns before the votes, slivers of details were shared, some of which we know now were untrue and have resulted in court actions.
It’s now nearly 3 years since the referendum and the general public have a bit more of an understanding of some of the implications to leaving the EU, but there is still a lot of unknowns, uncertainty, and lack of clarity. Frankly, this is understandable as it is complex issue and its complexity is difficult to communicate.
But this isn’t about Brexit. Everything in the story of Brexit is a good illustration of the challenge of informed and meaningful consent. From a legal, moral, ethical perspective when our data is being captured, stored, shared, and used, we should be required to give consent. If you live or travel through Europe, you will be aware of this to some extent due to GDPR.
The challenge is not the consent, it’s the informed and meaningful part. In the humanitarian space or in work with vulnerable people, it is usually quite easy to ‘gather’ consent due to the power differentials at play; however it’s super difficult to have it be informed and meaningful. Frankly, this is because it is complex, difficult to communicate, and not everything is known at the point of collection.
Unlike Brexit, the decision to grant consent must come with the ability to revoke consent too. However, often in the humanitarian space speed is seen to be the biggest priority so the time allocated to explaining why we are collecting data, what we are doing with it, where it is stored, with whom it is shared, etc. is very minimal.
It is unlikely 100% informed consent can ever be obtained and so perhaps that should not be our goal, but there is no doubt that we can communicate much better than we are. If we choose not to, if we choose not to invest time and resources into creative ways for people to better understand their data rights, then we should be asking why and I’m not sure we can say we are acting with the best interest of vulnerable people in mind.
Photo by Cody Davis