Quantified Self community resources are partially supported by funds from Article 27, which is dedicated to advancing the practice of everyday science through education, advocacy, and open tools.
The Quantified Self and Global Health
Widespread interest in patient participation, precision, and high resolution measurement in health has brought intense attention to the the emerging practices of self-tracking, self-experimentation, and peer-learning pioneered in the Quantified Self community. Old paradigms of group research, in which individuals are treated merely as research subjects, with no right to learn from their own data, are in conflict with the current focus on highly personal data gathered in the context of daily life, an approach that ethically requires far greater respect for individual agency. Article27 was created to advance universal access to tools, methods, and community support for everybody to learn about themselves using empirical methods so they can improve their decision making ability, self-efficacy, and wellbeing.
Why We Chose The Name “Article 27”
The Universal Declaration of Human Rights was adopted by the UN General Assembly on 10 December 1948. For most of that time this article, which is quoted in full below, received little attention. But for those of us working on participatory science and open culture, the first clause of this “neglected article” has become an essential text, because it clearly acknowledges that the right to participation in science is a fundamental human right. Recent scholarship looking at the background of this article shows us that it was written to highlight the right of active contribution to scientific culture. This implies a right of access to data, instrumentation, and scientific literature, because without access to data, tools, and knowledge no participation in science is possible.
Everyone has the right freely to participate in the cultural life of the community, to enjoy the arts and to share in scientific advancement and its benefits. Everyone has the right to the protection of the moral and material interests resulting from any scientific, literary or artistic production of which he is the author.
The second clause, which is typically used to defend private copyright interests, is also important to us, because much of the human sciences today is founded upon data collected from individual people in the course of their daily life, or “harvested” from individuals through enrollment in scientific studies. When our own data is used for scientific production by others, shouldn’t we also have a right to use it ourselves? If we have a right to the moral and material interests of any scientific production of which we are the author, don’t we also have a right to use materials of authorship derived from our own bodies and experiences?
The Role of Article 27
Everybody can think. Respect for our ability to make purposive decisions is the foundation of all our human rights, and goes to the heart of what it means to be a person. If thinking is our birthright, then science, our accumulated tradition of formal tools for thinking, equally belongs to everyone. In defining our program for Article 27, we follow through on the radical implications of the simple idea that everybody has a right to science.
Building on a decade of work in the Quantified Self community, Article 27 aims to do foundational work of education, advocacy, and instrumentation so that everybody can access useful tools for reasoning about themselves using their own data. If you share this aim, as a funder, developer, researcher, or community member, please get in touch. We are happy to talk about how we can help.