Parallel session 14:30 - 16:30

Dealing responsibly with ethical, legal and societal issues (ELSI) in Personalised Medicine research

Please note: this session has been fully booked, it is no longer possible to register for this session

Personalised Medicine promises to bring powerful new ways of improving treatment and health care, tailored to individual patients. Yet great power to improve health, care and well-being comes with great responsibility. The ELSI Servicedesk, set up by partners of COREON and BBMRI-NL, aims to offer guidance and answers to the ethical, legal and societal conundrums faced by life science professionals, policymakers and patients alike. In this interactive workshop, we map out the issues you face in policy and practice, provide tentative answers where possible, and explore ways in which a shared service could help address these problems effectively and responsibly.

The ELSI Servicedesk is funded by ZonMw, Zilveren Kruis and the Dutch Cancer Society from the Personalised Medicine Program.

Speakers

Dr.ir. Mariska Bierkens
Scientific researcher at the Netherlands Cancer Institute

Poweruser for the Center for Translational Molecular Medicine, Translational Research IT (CTMM TraIT) to evaluate data-management tools in translational research; part of the Foundation Team involved in further developing the data-integration platform tranSMART; and data consultant for researchers wanting to use sustainable research IT solutions for their data.

Dr. Bierkens will be speaking about the ethical, legal and societal challenges encountered in the AACR Project GENIE.

Dr. Susanne Rebers
Research fellow at the Netherlands Cancer Institute
Project leader Health-RI ELSI Servicedesk

Susanne Rebers works as a postdoctoral researcher at the Netherlands Cancer Institute on a number of projects relating to information provision, consent procedures and responsible use of human tissue and data in health research.

Martin Boeckhout MSc MA
Policy advisor on ethical, legal and societal issues for BBMRI-NL
Project leader Health-RI ELSI Servicedesk

Martin Boeckhout is policy advisor on ethical, legal and social issues to BBMRI-NL. Together with Gerhard Zielhuis, Martin set up and coordinates BBMRI’s Patient and Public Advisory Council (Maatschappelijke Adviesraad Biobankonderzoek). He is interested in issues at the interface of science, politics and public policy.

 

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