title: Ethical issues and GenomEUtwin.
abstract: 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.
authors: Division of Epidemiology, Department of Genes and Environment, The Norwegian Institute of Public Health, Oslo, Norway. jennifer.harris@fhi.no
authors: Jennifer R
authors: JR
authors: Harris
authors: Gonneke
authors: G
authors: Willemsen
authors: Tiina
authors: T
authors: Aitlahti
authors: Carlo
authors: C
authors: Petrini
authors: Alun
authors: A
authors: Evans
authors: Kaisa
authors: K
authors: Silander
authors: Lia
authors: L
authors: Cirrincione
authors: Kirsten Ohm
authors: KO
authors: Kyvik
mesh_terms: D003219:Confidentiality; D004989:Ethics; D005062:European Union; D006801:Humans; D007258:Informed Consent; D012106:Research; D018433:Twin Studies as Topic / Q000191:economics / Q000331:legislation & jurisprudence