Elements of a new ethical framework

In Elements of a New Ethical Framework for Big Data Research, released by the Berkman Klein Center last March, the tough relationship between making research data public and open while also protecting privacy. According to the article, although information collected using big data technology (especially health-related data, such as DNA sequencing) is invaluable for scientific research, one must be aware of the many risks involved in its disclosure to the public, and even anonymization is often not enough to guarantee adequate privacy protection and the security of health database systems.

However, the article holds, such framework is based on practices that are out of place in non-clinical research – the informed consent theory may have become insufficient to  deal with sensitive data storage

The current framework for data protection in human subjects research, developed in the 1970s, is based mainly in the idea of informed patient consent as a tool to avoid or minimise the risks involved in health data storage. However, the article holds, such framework is based on practices that are out of place in non-clinical research – the informed consent theory may have become insufficient to  deal with sensitive data storage mainly because current research with human subjects has expanded and there is a gap between the research object and the researcher. That way, the object -i.e. the owner of health data- only acknowledges how his data is going to be used by reading terms of use, which can have broad and dubious terms.

This article’s main issue is the advocacy for the creation of a new ethical framework to protect personal data. This new framework has to protect the user’s information, while also granting incentives for more people to participate in human subject research by freely giving their health data.