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Sharing Human Genetic Data for Biomedical Research: Technical, Legal and Et...

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Aula 204

Via Celoria 22

20133 Milano

Italy

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ELIXIR unites Europe’s leading life science organisations in managing and safeguarding the increasing volume of data being generated by publicly funded research. It coordinates, integrates and sustains bioinformatics resources across its member states and enables users in academia and industry to access services that are vital for their research

This meeting is a one-day workshop, organized by the Italian ELIXIR node, to present and explore technical, legal and ethical aspects of the sharing of human genetic data for biomedical research with national and international exprerts. Confirmed speakers include coordinators of bioinformatics projects for secure sharing of genetic data, bioethicists and experts on the General Data Protection Regulation (GDPR).

The workshop will be held in Lecture Theatre 204 on the 22nd Febrary 2019 at the Department of Biosciences of the University of Milan (Via Celoria 22, 20133 Milan).

Refreshments (a light lunch and coffee) will be provided. Attendance is free, but registation through this site is required.

A provisional program is shown below and will be updated in the next days.

We look forward to seeing you on the 22nd!


10.30: The ELIXIR Beacon and GDPR: considerations, mitigations, and implementations

Gary Saunders (ELIXIR Human Data Coordinator, ELIXIR, Hinxton, UK)

11.10: The EGA beacon and other GA4GH-related projects

Arcadi Navarro (Universitat Pompeu Fabra, Barcelona, Spain)


11.50: The BBMRI_ERIC code of conduct

Michaela Theresia Mayrhofer (BBMRI-ERIC, Graz, Austria)

12.30 - Lunch


14.00: GDPR and EU Regulation 536/2014 change consent to research using samples and personal data: BBMRI.it informed consent matrix

Sara Casati (Milano Bicocca University, Common Service ELSI BBMRI ERIC/IT)

14.40: Genetic data processing in light of the EU General Data Protection Regulation

Luca Marelli (Centre for Sociological Research (CeSO), KU Leuven, Belgium)

15.20: A University Perspective

Pierluigi Perri (Data Protection Officer, University of Milan, Italy)

16.00 - coffee


16.20: The pilot project on rare diseases in Andalusia (genomic and clinical data), database of Spanish variability with a beacon

Joaquin Dopazo (Fundacion Progreso y Salud CDCA, Seville, Spain)

17.00: Somatic alterations in cancer: are they "genetic" data?

Luca Mazzarella (European Institute of Oncology, Milan, Italy)



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Aula 204

Via Celoria 22

20133 Milano

Italy

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