Personal Data and Privacy Working Group Often, discussions around personal data management, ownership, control and access fail to consider dystopian possibilities. Therefore, we present 3 scenarios (stories) about how things go horribly wrong with 3 individuals:
1. My niece will be born within 5 years. According to the registries of the health system she will have a big probability of suffering from a heart attack before the ages of 40. Other institutions which have access to the DNA registries of her and her family discover that she will have a very creative mind. Segmenting this and analyzing other social aspects of her parents the home office discover a tendency to be a social activist, who must be investigated closely. The education system recommends a specific curriculum for her according to inherited attitudes, more focus on human studies than in science. Her parents prefer her studying Maths, but the authorities said that it would have an extra costs. So in the school and the University she met some people very close to her way of thinking, around a social change. This behavior was detected by the police though her social network and supported by the previous analysis made a lot of years ago by the home office. In some moment on time she detected that the police was following her and she became a bit aggressive in some public demonstrations against the government. One morning she suffered a heart attack when find out she was being followed by a stranger.
2. Jay is a youngman in the University somewhere in Europe. Due to recent legislation which gives him full access to, ownership and control over his data, plus the emerging discourses around how much personal data management is worth economically, Jay decides to offer all of his data for sale to the highest bidder. This included all his personal (social media) conversation via text and emails, as well as all his health, education. financial, geo data, retail, legal records etc.
In addition to this, he signs up to offer his full records perpetually. He obtains a sizable amount of money and is quite pleased with this arrangement. Fast-forward to a few year and Jay is out of school and is just been considered for a new position in another country. Unfortunately for hism, the new organisation was able to access all his records for a small fee. In it, they were able to find out that Jay falsified some of his school records, had previously harbored a fugitive in his university hostel and had defaulted on his student loan payments. Additionally, he was unable to obtain any reasonable insurance due to the fact that he was perceived as a high risk. Needless to say, he did not get the job or any others.
3.Susan is very protective of her data. So concerned was she about privacy that she manages it all herself. She has total control over each and every single information collected about her and is responsible for storing and managing it, dispensing it only when necessary.
Over time, this becomes a huge burden and she had to increase the capacity of her storage devices in order to contain all the data. Additionally she had to take a Masters degree in Computer Science (Information Management) in order to effectively make sense of the ever-increasing data, spending quite a lot of money in the process. Fast-forward to a decade and Susan is diagnosed with a terminal disease. All her property (including the data storage)is passed on to her nephew who knows nothing about data management and was therefore unable to provide doctors with her medical history which would have enabled them to find treatment for her condition. Due to this, she died without a solution been found.