Chapter 1: Accept
The mouse pointer hovered over ‘accept’. My favourite spot in the castle library was by the bay window overlooking the terraced rose garden leading to the sea. I was 17 at the time, finishing school at Atlantic College – a educational initiative set up in the 60s with Mandela as president at one point. Teenagers from around the world are selected for their academic performance and social drive to make a difference. There’s a donation system which means that the richer students subsidise the less rich so it’s not your average expat international school. Someone donated a leaky castle in the remote Welsh coast which was in ever need of refurbishment but provided endless entertainment to curious adolescents. We would regularly be photographed in deliberately multicultural photos in a circle, but truth be told, like all teenagers we were mostly interested in one thing: who liked who? Love stories, crushes, the regular high school drama, meant that over the past two years we’ve had enormous fun and the prospect of this time coming to an end where all of us would return to literally all corners of the world was daunting. Word had it that there was this new tool which made it easy for us to keep in touch: Facebook. So, there I was, in the computer room of my experimental school clicking ACCEPT.
Figure 1 I accepted the Facebook terms and Conditions when I was 17 years old in the luxuriously leaky library of Atlantic College.
“Today marks 28 years since I submitted my original proposal for the world wide web. I imagined the web as an open platform that would allow everyone, everywhere to share information, access opportunities and collaborate across geographic and cultural boundaries. In many ways, the web has lived up to this vision, though it has been a recurring battle to keep it open. But over the past 12 months, I’ve become increasingly worried about three new trends, which I believe we must tackle in order for the web to fulfil its true potential as a tool which serves all of humanity.
1. We’ve lost control of our personal data
2. It’s too easy for misinformation to spread on the web
3. Political advertising online needs transparency and understanding”
– Sir Tim Berners-Lee in Spring 2017
I was born in the same year of that proposal, 1989. The first generation of Internet experiments – a digital native, but only just.
I think I deleted my Facebook for the first time when I was 25. The autodestruct button is deep in the underbelly of settings and there are multiple stages where you have to reaffirm your decision. There’s a window of about a month where you can still reverse your decision and you get emails and messages tempting you to come back during that window. ‘Someone left you a message, click to find out who’. My friends started complaining. Why did I leave? Why am I being so inconvenient? Why? I felt like I was going mad. I just found notifications irresistible and scrolling was like being stuck in a guinea pig wheel. Sometimes I would find myself with this overwhelming urge to, just check, quickly. The pings from my mobile phone where intensifying in frequency and the ever-increasing red numbers up on the app logo where just impossible not to click on. I’d find myself clicking on the app just to get rid of the red number. I spent hours on the thing, checking, re checking, checking again. What was I even looking for? Not even 10 minutes passed before I got another twinge to, just, check. Obviously the first attempt at cold turkey failed miserably. I was back on before the window was over. There were several attempts to quit. My announcements at my departure over posts with a number to contact me on started to inspire snarky messages of: “again?” and rolling eyes from friends. At 27, a decade after I clicked ACCEPT in that leaky castle, after my multiple failed increasingly comical attempts, I succeeded. I made it to the end of the window of return and I am now officially: not. on. Facebook.
It’s not only the mad uncontrollable addiction to notifications and scrolling that brought me to Facebook abstinence but a nagging questioning of what I was accepting.
I worked as a neuroscientist for a Brazilian epidemiology study designing experiments for a new cohort study looking into decision making in health behaviours. In 1982, a group of scientists started recording as much as they possibly could about all the babies born that year. At 11-year intervals a new cohort of babies would be recorded, and we were setting up for the fourth round. There was a noticeable shift in the cause of death from one of infectious disease to chronic diseases as a result of lifestyle. Lifestyle boiling down to what you eat, physical activity, alcohol and tobacco consumption. The big question at hand therefore was: why were some people choosing to eat better than others? Move more than others? Drink less alcohol and smoke less tobacco? If we could crack the pathways leading to these lifestyle decisions we could understand how to steer ourselves and society towards a better quality of life.
Part of experimental design is looking at what data to collect. It was the first cohort with iPhones. The smart phone was common place. Yet, here we were designing questionnaires to find out what someone ate last Tuesday. How do you really find out what people understand to be a normal portion of food? Do we even admit our bad habits to ourselves? The frustration was that the data from these smartphones was so valuable for public health, yet it was unimaginable how we could seriously access it via these American companies despite both the researcher and the person being researched wishing that were possible. The frustration of knowing so much in the lab but not seeing it being implemented in reality as well as the frustration of having such wonderful technology available but not being able to use it for public good led me to return to Europe and become an entrepreneur. I was thinking of how to get individuals to own their data and how they could donate or sell it to parties with explicit statements of what they wanted to do with that data.
Several years on, having spoken to a wide variety of people about data policy and the ethical implications, I’m going to share this journey with you along with the different perspectives that I have come across along the way. Having enthusiastically launched into the Internet era and watched the consequences unfold, it is now possible to reflect how to use the Internet in our society.