Use of health data in the human brain project

April 9, 2014

Multi-level patient data federation and the development of personalised medicine for brain diseases

The Human Brain Project (HBP) plans to use anonymised data from hospitals throughout europe and to use that data, among other things, to discovery dissease signatures and contribute to making personalised medicine reality. But how can the HBP make sure that they stay within the lines of the law and how can they handle people’s data in a morally justifyable way. What does anonymous data actually mean, and how hard is it to achieve this. What is personalised medicine and what are disease signatures. What are the challenges and opportunities of personalised medicine, what might the social and ethical issues be that arise from these developments?

In the webinar on “Multi-level patient data federation and the development of personalised medicine for brain diseases”, eight experts from a broad variety of fields, gave talks about these questions from their own knowledgeable perspectives. The webinar has been recorded and the presentations and commentary sessions can be watched back below. 

Click HERE for recordings of the second theme on the Development of ‘disease signatures’ and personalised medicine

First theme: Multi-level brain data federation and protection

The HBP will federate multi-level patient data bearing on brain-related diseases already stored at hospitals collected for other purposes. Cloud technology, combined with the internet, allows federating data from research groups and clinics all over the world. The collected data will be used to make a ‘Google like’ system where all who contribute to the HBP will get access to the aggregated anonymised data, while individual data will remain local and under the responsibility of collaborating institutions. The ambition is that more sharing and collaboration between neuroscientists will enable new insights into the processes in the brain.

  • Dennis-Kenji Kipker, European Academy for Freedom of Information and Data Protection (EAID)
  • Dirk Lanzerath, Head of Secretariat, European Network of Research Ethics Committees (EUREC)
  • Paul Quinn, Researcher, Group on Law, Science, Technology & Society, Vrije Universiteit Brussel (VUB)
  • Caspar Bowden, Independent privacy researcher, surveillance tech/law/policy and former Chief Privacy Adviser at Microsoft

 

Legal Regulations and Data Privacy Issues Presentation Dennis-Kenji Kipker

Commentary Dennis-Kenji Kipker

Ethically Justified Data Management Presentation Dirk Lanzerath

Commentary Dirk Lanzerath

The Use of Medical Data In Research – Data Anonymisation Presentation Paul Quinn

Commentary Paul Quinn

Data Anonymisation Techniques and Anonymity Presentation Caspar
Bowden
Commentary Caspar
Bowden