From the magazine LSR 2/2020 | S. 58-72 The following page is 58

Unlocking the Potential of Scientific Data-Driven Research

A Pragmatic Proposal to Enable Research While Preserving Privacy and Inspiring Trust

Keywords:
Data Protection Law, Human Research Law

Abstract

The use of data in biomedical science and research has become important, particularly in light of recent health crises. While privacy laws were supposed to help enable research within its framework, this has been difficult in practice. The authors propose pragmatic avenues to managing clinical studies and scientific research that are privacy-preserving, research-enabling and earn the trust of data subjects. In light of the rise of real world data, the authors apply these same concepts to spin these data into “gold” in a privacy-friendly manner.
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