ETHICs CORE |
ethics@genomeutwin.org |
ETHICAL AND LEGAL EXPERTISE
The Ethics Core will operate across centers to oversee that the procedures used in the GENOMEUTWIN study are congruent with current national ethical guidelines and regulations. Major ethical questions associated with the objectives of this study involve informed consent, data security and confidentiality and questions related to information that will be generated from this research. Due to the multinational nature of this project, the Ethics Core will work to harmonize the protocols and prepare additional codes of practice in co-operation with the national investigators. Additionally, the core is responsible for recruiting and helping to train new students to develop research agendas and conduct empirical studies in ethical and social issues related to human genetic and genomics research. The core includes representatives from each center and an internationally acknowledged external experts, Professor Bartha Maria Knoppers, and Professor Mats Hansson.
Ethical Issues for the GenomEUtwin manual
Table of Laws - GenomEUtwin 2007
Swedish Biobank law in English
members of ethical core
Chair: Jennifer HarrisPartner 1: KTL (Kaisa Silander)
Partner 2: SDU (Kirsten Kyvik)
Partner 3: UH.DPH (Jaakko Kaprio)
Partner 4: ISS (Carlo Petrini )
Partner 5: NTR (Gonneke Willemsen)
Partner 6: NIPH (Jennifer Harris)
Partner 7: KI-MEP (Nancy Pedersen)
Partner 8: QUB (Alun Evans)
and
Lynne Molloy, St. Thomas Hospital and UK twins, London
Dixie Statham, Australia twins
Bartha Maria Knoppers
Lia Cirrincione
Ulf Pettersson
Mats Hansson
Legal expert: Tiina Aitlahti, University of Helsinki.