Ethics and Big Data in health

Abstract

With the EU General Data Protection Regulation entering into force in 2018, the stage is set for international debate on Big Data sharing in health. Considering the fact that health data (and especially genetic data) are considered “sensitive”, is there a way to structure the debate on the barriers, and risk-benefit ratio that moves away from the traditional pros and cons of potential privacy and discrimination risks? Potential discrimination has been addressed in legislation and the balancing of privacy rights against the potential benefits of data sharing in intensive science is leading to a more proportionate approach.We postulate that an important catalyst that will further shift this debate from its traditional contours would be to activate the “right to science” as enshrined in international law. Of note, the Global Alliance for Genomics and Health has developed a Framework for Responsible Sharing of Genomics and Health-Related Data based on that human right. Similarly, recent guidelines from the Council for International Organizations of Medical Sciences and the Organisation for Economic Co-operation and Development, as well as from the American College of Medical Genetics and Genomics contain provisions that promote data sharing indicating that data intensive science may gradually come to be founded on a more communal ethos.