Ethics Advisory Board (EAB)

The Ethics Advisory Board will monitor all issues with respect to observation of ethical principles in human and animal studies. It will guarantee expert support in specific ethical issues arising e.g. from the handling of genomic information, prenatal molecular screening, the use of stem cell technology etc. The Ethics Advisory Board will be asked to review the research plans and operating procedures for compliance with ethical standards and will consult the partners during the course of the project.


Prof. Chantal Loirat
Pediatric Nephrologist
Université Paris Diderot
Hopital Robert Debre

Dr. Loirat has a worldwide reputation in research and clinical care for children with rare kidney diseases.

Prof. Milan Macek

Prof. Milan Macek Jr. MD, DSc
Pediatric Nephrologist
Department of Biology and Medical Genetics
Charles University Prague

Professor Milan Macek Jr. MD, DSc is the chairman of the largest academic medical / molecular genetics institution in the Czech Republic, which also comprises a research / diagnostics reproductive genetics centre ( He is also the Vice President of the European Society of Human Genetics (www.eshg,org), board member of the European Society for Human Reproduction and Embryology ( and of the European Cystic Fibrosis Society ( His institute is a "clearing centre" for dissemination of knowledge in genetics gathered within various international European projects, such as CF Thematic Network, EuroGentest,  EuroCareCF or Techgene, to Central and Eastern Europe.

Prof. Macek did his first postdoc at the Institut of Human Genetics in Berlin, continued as a postdoctoral fellow at the McKusick-Nathans Centre for Genetic Medicine, Johns Hopkins University in Baltimore and during that time he was also a fellow at Harvard School of Medicine in Boston. He was the local host of the 1995 HUGO Mutation Detection Course in Brno, the 2005 European Society of Human Genetics conference and of the 2008 European Cystic Fibrosis Conference, both held in Prague.

Prof. Macek is national coordinator of Orphanet (, active member of Eurogentest (, has been the chief advisor of the Czech EU Council Presidency  under which the “EU Council recommendation on an action in the field of rare diseases“was adopted in June 2009. He also serves at the committee on rare diseases.

Dr. Daniel Renault
Président AIRG-France
Association for Information and Research on Genetic Renal Diseases

Dr. Daniel Renault is the chair of FEDERG, the Federation of European Associations of Patients affected by Renal Genetic Diseases ( as well as the chair of AIRG-France,  Association pour l’Information et la Recherche sur les maladies rénales génétiques (

Prof. van Delden

Prof. Johannes Van Delden
Professor of medical ethics
Julius Center for Health Sciences and Primary Care/UMC Utrecht

Johannes JM van Delden (1960) is full professor of medical ethics at the Julius Center for Health Sciences of the medical school of Utrecht University. His special fields of interest are: research ethics, moral problems at the end of life and moral problems in the care for the elderly.