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Summer Institute ”Genetics, Ethics and Clinical Translation”
22-25th June 2010, Egmond aan Zee, The Netherlands

This four day intensive course was held at the Zuiderduin Hotel in The Netherlands from the 22nd to the 25th of June 2010.

The course was designed for professionals who want to learn more about the ethical, legal and societal implications of the translation of epidemiological results from genetic and genomic research to clinical practice.

The Summer Institute offered insight about issues and solutions applicable to the field, and gave participants the opportunity to actively interact with the lecturers through debates and working group sessions.

3 main topics were covered:

- Introduction to translational research and ethical, legal and societal issues in biobanking,

- Implications of genetic testing, personal genome and personalized medicine,

- Engaging stakeholders and society.

The faculty gathered world-known experts whose work reflects broad international experience.

The Summer Institute was jointly organised by the ENGAGE Consortium (European Network for Genetic and Genomic Epidemiology), the Centre for Society and Genomics (CSG) and P3G (Publication Population Project in Genomics).

The Power point presentations from the course can be downloaded by clicking on the links below:


Day 1: Introduction to Translational Research and ELSI issues in Biobanking


Welcome and introduction - Cecile Janssens

Prospective/Retrospective Biobanking and Translational Research - Jennifer Harris

Ethical, Legal and Societal Issues in Biobanling - Bartha M Knoppers

Biobanking and Public Health: Uses and ELSI Implications - Marta Gwinn

Working Group Session - Case Study 1 - Bartha M Knoppers and Anne-Marie Tassé

Expectations about the Future of Personal Genomics: Markets, Investors, Regulators and Users, Richard Tutton

Day 2: Towards Translation: Genetic Testing, Personal Genome and Personalized Medicine


Introduction to Genetic Testing and Pharmacogenomics - Cecile Janssens

Genetic Screening: Policy, Organization and Update - Martina Cornel

Psychological and Behavioural Implications of Genetic Testing - Lidewij Henneman

Working Group Session: Case Study 2 - Cecile Janssens

Ethical, Legal and Societal Implications of Genetic Testing - Anne-Marie Tassé

In Search for a Balance Between Privacy Protection and Powering up The Discovery - Maria Kreystianinova

Day 3: Towards Translation: Genetic Testing, Personal Genomes and Personalized Medicine


Introduction to Commercial and Recreational Testing - Cecile Janssens

Ethical Aspects of Commercial and Recreational Testing - Heidi Howard

Policy Aspects of Commercial and Recreational Testing - Christine Patch

Day 4: Engaging Stakeholders and Society


Introduction to Interactions and Strategies - Jacqueline Broerse

Are the Respect for Privacy and Open Source Compatible? - Yann Joly

How to Communicate Scientific Results to Stakeholders? - Denise Avard

Working Group Session: How to engage scientists? - Frans van Dam (Introduction)

- Hoax article

- Instructions for activists

- Instructions for popular press

- Instructions for scientific press