Governing Health Data
This session is part of the Introduction to Political Technology course at Newspeak House, open to faculty and fellowship candidates only.
During this workshop we will explore the complexities of governing health, specifically patient’s medical records. We will delve into real-world examples where the public good (e.g. finding a cure to a disease) is at odds with the privacy rights of individual patients.
Reading:
OECD Report on facilitating secondary use of health data to improve public health outcomes
Use of Biobank UK and 23AndMe data to search for a “gay gene”
Anouk Ruhaak is a data governance expert, helping organizations and communities design and implement models that put people first, from data trusts to data commons. She is chair of Stichting Data Bescherming Nederland (SDBN), a foundation using strategic litigation to fight for privacy rights, currently taking legal action against companies like X, Amazon, and Adobe.
She has been a Senior Fellow at the Mozilla Foundation, a Fellow at AlgorithmWatch, a Visiting Scholar at the Ostrom Workshop, a political economist, a data journalist, a software developer, and a fellow of Newspeak House.