Collection (Work package 1)
The goal of the work package on collection is to explore and trace donor and collaborator interests at multiple sites internationally during the process of collecting and setting up of a biobank in Denmark...
Biobanking – genetic screening (Work package 2)
The aims of WP2 are to provide candidate cilia and centrosome genes for WP3 for functional studies, and data and options for the other WPs. The WP2 groups have the necessary consents from the Danish, Pakistani and US regional/central research ethical committee’s regarding exome and full genome screening, including the local setups for proper counselling of coincidental findings.
Functional analysis (Work package 3)
This work package addresses the biological function of identified candidate disease genes, plus hitherto uncharacterized genes known to be associated with cilia and centrosomes using mouse and human cell cultures as well as zebrafish and mouse models with live cell and tissue imaging methods, transcriptomics and proteomic approaches.
Legal Framework (Work package 4)
The commercialization part of WP 4 analyzes which organisational and legislative choices biobanking may involve and whether publicly funded biobanks should engage in tech-transfer and the protection of research results through i.a. IPRs. Besides providing insights that will re-emerge in WP6, special emphasis will be laid on interconnecting WP4 with WP2 and WP3.
Ethical Framework (Work package 5)
The aim of WP5 is to address certain specific ethical challenges arising from biobanks operating across boundaries of diverse ethical norms and values. The focus will be on the collection of samples planned in WP2 in Pakistan, and the specific ethical challenges that this will generate for various stakeholders.
Guidelines (Work package 6)
The aim of the guidelines is to optimize the efficiency and quality of cross-border biobanking by capturing the concrete results of WP1, WP4 and WP5 in order to provide an instrument that can provide concrete and ethically and legally sound guidance in biobanking projects generally.