Big data and the culture of privacy
Nowadays, big data technologies allow working with a big quantity of complex data. The two main causes that led to the creation of the document are: the need to arise social debate on the exploitation and marketing of user-generated health data to inform citizens before any political decision is taken, and the violation of data anonymity derived from the application of big data technologies. The study analyses different models, for instance VISC+, a project developed by the Government of Catalonia to make user-generated health information available for citizens, businesses and research.
The document analyses the dangers derived from the violation of privacy and confidentiality of personal data stored on health data bases. Data anonymity justifies commercialization, but the document proves that big data technologies allow having access to many restricted data.
Authorsʼ main objectives are to create a “culture of privacy” in the context of the information society where personal data have become a strategic element, and to propose some measures to guarantee human rights. Experts suggest to promote, respect and guarantee the right to intimacy, particularly in the case of the administration, and to defend principles such as transparency and accountability, which they consider necessary to value the risks and benefits at the stake.
Why is it important to protect health-related information?
The document analyses, from a bioethical perspective, the problems derived from the reutilization of user-generated health data, strategic information that requires special protection in the framework of a business model based on personal data which is growing.
According to the publication, citizens lack a culture of privacy that will enable them to understand the effects derived from accumulating and making profitable personal data. This information can become a tool that allows, for instance, “denying a service on the basis of a personal profile”. Therefore, citizens must get closer to a debate on the exploitation and marketing of health-related user data.
Considering the principle of autonomy, the document reveals that the implementation of big data technologies in the field of health, together with data marketing, directly affects the health system and citizensʼ privacy. The commitment to innovation cannot forget ethical aspects and peopleʼs fundamental rights. Therefore, measures for the application of big data technologies in the field of health must be taken in order to guarantee the exercise of human rights.
The Bioethics and Law Observatory of the UB
The Bioethics and Law Observatory of the UB offers a way of doing bioethics that is based on a flexible and multidisciplinary approach, within a framework of respect for recognised human rights. The aim is to provide reliable information and arguments to encourage social debate and independent decision-making, thus contributing towards a more transparent and democratic society.
In this context, some of the tasks developed by the OBD are to analyse ethical, legal and social implications of biotechnology and biomedicine new technologies, and to promote the dialogue between university and society in order to arise social and plural debate. Founded in 1996, OBDʼs Opinion Group has created a total of twenty-two documents that identify problems, discuss arguments and make recommendations on topical social issues.
Catalan and Spanish versions of the document are available here. The English version will be very soon available.