Value and risks of genetic data collection

Session 1
Genetic collections from a researcher point of view:
stakes and problems

Chair : Prof. Heidi Diggelmann, Former President Research Council
Swiss National Science Foundation

Moderator : Prof. Geneviève Schamps, Professor of medical law,
Université catholique de Louvain (UCL)

• Dr David Gurwitz, PhD, Director, National Laboratory for the Genetics of Israeli Populations, Department of Human Genetics and Molecular Medicine Sackler, Medical Faculty, Tel-Aviv University
• Prof. Styliano Antonarakis, Head of Genetics Department, Geneva Hospital and Medical Faculty, University of Geneva
• Dr Renate Gerz, Research Fellow, School of Law, Old College, University of Edinburgh, Scotland
  “Recruiting families for genetic research databanks – the problems and perils”, co-authored with Wendy Marsden, Doctoral Fellow

Session 2
Patrimonial or collective interests in genetic data collections

Chair : Kristleifur Kristjánsson MD, Senior Director of Medical Affairs, deCODE
Genetics inc.

Moderator : Philippe Ducor, Professor of intellectual property law and biotechnology law, Law School, University of Geneva

Part one : Issues for pharmaceutical and biotech companies

• Prof. Klaus Lindtpaintner, Vice president and Director, Roche Genetics
• Ms Homa Syeda Hasan, Bioethics Adviser, Norwegian Institute of Public Health
  “GenomEutwin: Utilising genetic data collections across eight countries”

Part two : advantages and Risks for Society

• Prof. Vilhjálmur Árnason, Professor of Philosophy and Chair of the Centre for Ethics University of Iceland
  "An Ethical Analysis in Light of the Icelandic Experience"
• Mr. Jan-Eriek Leppanen, International Institute for Asian Studies, Netherlands
  “Genetic Data gathering, external interventions and vulnerable ethnic minorities in Southwest China”

Session 3
Genetic Data Collections and the Legal Environment: Policy issues in regulating collections and protecting subjects (individual or groups)

Chair : Prof. Herbert Gottweis, Head Dpt of Political Science, ELSA program,
University of Vienna, Vice-president of the Austrian Science Fund (FWF)

Moderator : Prof. Dominique Sprumont, Institute of Health Law, University of
Neuchâtel

• Prof. Deryck Beyleveld, Director of the Sheffield Institute of Biotechnological Law and Ethics, University of Sheffield
• Mr. Jasper Bovenberg, Attorney at Law, Member of the Hugo Committee, Netherlands
• Dr Mark Taylor, Lecturer in Law, University of Sheffield, England
  “Does Data protection directive 95/46/EC adequately protect people from the risks to fundamental rights and freedoms posed by the acquisition and use of personal genetic data ? A UK perspective.”

Session 4
Genetic Data Collections and individual freedom

Chair : Prof. Yvon Englert, M.Dl, Ph.D, Head of Dpt OB/Gyn Erasmus Hospital
Free University Brussels, Former President of the Belgian Bioethical
Committee, Member of the European Group of Ethics

Moderator : Prof. Timothy Harding, Head of Dpt Legal medicine, Geneva Hospital and Medical Faculty, University of Geneva

• Prof. Lynn Dressler, Research associate Professor, University of North Carolina, Lineberger Comprehensive Cancer Center, USA
  “Ethical Issues and policy recommendations for the use of human specimens in genetic research: a 10 year retrospective study”
• Mr. Gerald Porter, PhD research student, Research Centre for Studies in Intellectual Property and Technology Law, University of Edinburgh, Scotland
  “The British Police and the Proposed – Universal DNA Database: - controlling Crime or Curtailing Liberty ?”
• Ms. Harriet Washington, Research Fellow in Medical Ethics, Harvard Medical School, USA: “Race, Crime and SNPs: Genetic databases and U.S. Policy”

The symposium CD-ROM’s can be obtained by email (scientificprog(at)brocher.ch).
Le CD-ROM du Symposium peut être demandé à la Fondation par email (scientificprog(at)brocher.ch).