Organisation | Ref. |
International norms pertaining to biomedical research in general | |
WMA | 17 |
CIOMS | 18 |
CE | 19 |
International norms specific to biobanks of human biological materials and/or (associated) data and corresponding genetic testing | |
CE | 20 |
ESHG | 21 |
WMA | 22 |
HUGO | 23 |
WHO# | 24 |
UNESCO | 25 |
European Union | [26¶–28+] |
WMA: World Medical Association; CIOMS: Council for International Organizations of Medical Sciences; CE: Council of Europe; ESHG: European Society of Human Genetics; HUGO: Human Genome Organisation; WHO: World Health Organization; UNESCO: United Nations Educational, Scientific and Cultural Organization. #: European Partnership on Patients' Rights and Citizens' Empowerment. ¶: these recommendations were prepared by a multidisciplinary expert group consulted by the European Commission. Although this document focuses on genetic testing, several recommendations address human biological material collections and associated data specifically. The report and the Conference proceedings are presented elsewhere 29. +: although the scope of these directives is limited to therapeutic applications, the principles it lays down have implications for research. Data presented in an updated format from 15 with permission.