Cross-Border Data Integration for Personalised Medicine: Legal & Ethical Stakeholder Workshop
On 19 April 2022, the Legal & Ethical Work Package of EU-STANDS4PM will host an online workshop from 9am-12.15pm (GMT).
We will present short summaries of our legal & ethical report on data integration for personalised medicine. Presentations will cover data protection, research ethics and patients’ rights. Our report can be downloaded from the EU-STANDS4PM website, and is entitled:
'Harmonization and integration of big data of relevance for personalized medicine into in silico modelling? – Recommendations for technically feasible, and ethico-legal sustainable avenues.'
Our expert commentators and stakeholders will be asked to provide feedback on our recommendations; this will help refine our final project output & promote an interactive discussion among all attendees. We will have a broad range of international input with legal, ethical, regulatory and scientific experts. The full agenda is set out below.
If you would like to join, please register by emailing miranda.mourby@law.ox.ac.uk.
Privacy Notice: your personal data will only be used to send you information about the workshop, and will be deleted 4 weeks after the event. If you would to receive our updated Work Package recommendations, reflecting your feedback, please say and we will keep your details until 1 July 2022.
The workshop may be recorded and made available online, but participants should not be visible (other than presenters, commentators and stakeholders).
Agenda
9.00am: Welcome and Introduction (15 minutes)
- Brief Introduction to EU-STANDS4PM: Professor Mette Hartlev
Purpose of the Workshop
9.15: Data Protection & Technical Avenues for Data Integration (55 minutes)
Presentation: Miranda Mourby (15 minutes)
Expert Commentary: Professor Fruzsina Molnar-Gabor and Dr Catherine Bjerre Collin (10 minutes)
Stakeholder Questions & Feedback (30 minutes)
10.10: Interaction between research ethics guidelines and data protection regulation (55 minutes)
Presentation: Professor Eugenijus Gefenas, Jurate Lekstutiene & Vilma Lukaseviciene (15 minutes)
Expert Commentary: Professor Barbara Prainsack and Professor Dominique Sprumont (10 minutes)
Stakeholder feedback (30 minutes)
11.05 Break (10 minutes)
11.15: Rights of Patients & Research Subjects (50 minutes)
Presentation: Professor Katharina Ó Cathaoir (10 minutes)
Expert Commentary (10 minutes): Professor Santa Slokenberga and Dr Edward Dove
Stakeholder Questions & Feedback (30 minutes)
12.05: Wrapping up and way forward (10 minutes)