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