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Ethical Issues and GenomEUtwin

Published online by Cambridge University Press:  21 February 2012

Jennifer R. Harris ,
Gonneke Willemsen ,
Tiina Aitlahti ,
Carlo Petrini ,
Alun Evans ,
Kaisa Silander ,
Lia Cirrincione  and
Kirsten Ohm Kyvik
Jennifer R. Harris*
Affiliation:
Division of Epidemiology, Department of Genes and Environment,The Norwegian Institute of Public Health, Oslo, Norway. [email protected]
Gonneke Willemsen
Affiliation:
Department of Biological Psychology,Vrije University,Amsterdam,The Netherlands.
Tiina Aitlahti
Affiliation:
Supervision of Interest, Pharma Industry Finland.
Carlo Petrini
Affiliation:
National Center of Epidemiology, Control and Health Promotion, National Institute of Health, Rome, Italy.
Alun Evans
Affiliation:
Department of Epidemiology and Public Health, Queen's University Belfast, Northern Ireland.
Kaisa Silander
Affiliation:
Department of Molecular Medicine, National Public Health Institute, Helsinki, Finland.
Lia Cirrincione
Affiliation:
National Center of Epidemiology, Control and Health Promotion, National Institute of Health, Rome, Italy.
Kirsten Ohm Kyvik
Affiliation:
Epidemiology, Institute of Public Health, University of Southern Denmark, Denmark.
*
*Address for correspondence: Jennifer R. Harris, Ph.D., Division of Epidemiology, Department of Genes and Environment, The Norwegian Institute of Public Health, Post Box 4404 NydalenN-0403 Oslo Norway.

Abstract

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The post-genomic era is witnessing a proliferation of large-scale and population based genetic and genomic research projects. Many countries have or are establishing research biobanks and, as with GenomEUtwin, there is great interest in building multinational projects that link genotypic and phenotypic information from different centers. Clearly, the conduct of these projects raises multiple ethical issues, and the knowledge generated will continually recast the ethical, legal and social implications (ELSI) of such research. Maximising the scientific profit from this work while minimizing the risks to the participants requires full integration of ethics components into the structure and functioning of these projects. GenomEUtwin is organized around five intellectual cores, including an Ethics Core which operates across the entire project. This paper describes the role of the Ethics Core and presents an overview of the guidelines on which the principles followed in GenomEUtwin are based. We outline the major ethical concerns of our project and highlight complexities arising from diverse national legislations. Finally, the role of empirically based ethics research is discussed for understanding the ethical, legal, social and economic implications of human genetics and genomics research.

Type
Articles
Information
Twin Research and Human Genetics , Volume 6 , Issue 5 , 01 October 2003 , pp. 455 - 463
Copyright
Copyright © Cambridge University Press 2003