I am very grateful for the free or cheap services that you, Google, Amazon, Facebook and the like of you provide, your reliability and functionality have become vital in my life. I must admit that I am totally dependent on you to work, socialise and have fun. You have become so ubiquitous in my life that I do not imagine my current lifestyle without interacting with you on a daily basis. That means that you know a lot about me: you know about my socioeconomic status, what I search on the internet, who my friends are, what I shop, and probably many other things I do not know about myself.
Here is where I have a problem. I understand and accept that you may use my personal data for business, given that it is my choice to use you and your services are mostly free or at a good price. Nevertheless, I believe it is unfair that all the data you have about me you do not share it with me. I would like to have it please. Not because I necessarily mistrust you, although since you are not being completely open, that is a source of concern for me, but rather, because I feel that I have the human basic right to benefit from the data that you extract from me.
Fig 1: Eleanor Roosevelt and United Nations Universal Declaration of Human Rights in Spanish text (Franklin D Roosevelt Library website).–
Please let me illustrate the point above.
I am a genome scientist who has performed the analysis of 23andMe and other direct to consumer genetic testing. 23andMe allowed me to download all of the raw data that relates to my personal genome that they analyse. That has set a precedent for me. You do not know how much I have been able to learn from analysing my 23andMe genetic data independently. For example, I learned things like how I inherited my higher risk than normal to suffer from prostate cancer. This is very useful information that will inform my future life decisions.
I believe it is unfair that all the data Big Data Corporations have about me is not shared it with me.
In the same manner, I feel that all of the data that you have about me, if I had access to it, I might be able to use it to learn things about myself that could inform me having a better quality of life and the lives of those people around me. Because you currently do not let me have access to or know it, I am potentially not living my live to the full with our current level of technology progress.
Dear Big Data Corporations, benefiting from my own personal data is a basic human right. The sharing of personal behaviour patterns that you know about me is of key importance to ensure continued progress in my understanding of my personal health and wellbeing. This notion is not new nor mine. Article 27 of the 1948 Universal Declaration of Human rights guarantees the right of every individual in the world ‘to share in scientific advancements and its benefits’, including the right to freely engage in responsible scientific enquiry.
I would like to point you to the Framework for Responsible Sharing of Genomic and Health Related data from the Global Alliance for Genomics and Health. If I should have the right to access my genome data, since it is data that comes from me and could potentially have an impact on my wellbeing, I thus also think that I should have the right to access all of the data that you, Big Data Corporations, have about me. Not having access to this data you have about me might violate one of my most fundamental basic rights and yours.
Fig 2: Heading at the Global Alliance for Genomics and Health explaining its humans right approach.
I would be very happy to discuss this further and perhaps potentially to come up with an agreement that is fair both for you and me.
Categories: Data Sharing