Medical research, Big Data and the need for privacy by design

Abstract

Medical research data is sensitive personal data that needs to be protected from unauthorized access and unintentional disclosure. In a research setting, sharing of (big) data within the scientific community is necessary in order to make progress and maximize scientific benefits derived from valuable and costly data. At the same time, convincingly protecting the privacy of people (patients) participating in medical research is a prerequisite for maintaining trust and willingness to share. In this commentary, we will address this issue and the pitfalls involved in the context of the PEP project1 that provides the infrastructure for the Personalized Parkinson’s Project,2 a large cohort study on Parkinson’s disease from Radboud University Medical Center (Radboudumc), in cooperation with Verily life Sciences, an Alphabet subsidiary.