Addressing privacy risk in neuroscience data: from data protection to harm prevention.

Abstract

A recent increase in the amount and availability of neuroscience data within and outside of research and clinical contexts will enhance reproducibility of neuroscience research leading to new discoveries on the mechanisms of brain function in healthy and disease states. However, the uniquely sensitive nature of neuroscience data raises critical concerns regarding data privacy. In response to these concerns, various policy and regulatory approaches have been proposed to control access to and disclosure of neuroscience data, but excessive restriction may hamper open science practice in the field. This article argues that it may now be time to expand the scope of regulatory discourse beyond protection of neuroscience data and to begin contemplating how to prevent potential harm. Legal prohibition of harmful use of neuroscience data could provide an ultimate safeguard against privacy risks and would help us chart a path toward protecting data subjects without unduly limiting the benefits of open science practice. Here we take the Genetic Information Non-Discrimination Act (GINA) as a reference for this new legislation and search for answers to the core regulatory questions based on what we have learned from the enactment of the GINA and the merits and weaknesses of the protection it provides.