On behalf of the CS ELSI Task Force on International Organisation Policy Assessment and Monitoring Task Force (TF IO Policy), we inform you that the draft WMA declaration on health databases and biobanks on which the CS ELSI has been working on has been finalised and published.
This month, the WMA adopted the Declaration of Tapei on ethical considerations in Health Databases and Biobanks at the 67th WMA General Assembly, in Taipei, Taiwan (October 2016).
As a brief reminder, the WMA adopted this Declaration as a complementary tool to the Declaration of Helsinki as modified in 2013 taking into account the need for the medical profession to have guidance about how to ethically approach the rapidly growing agendas of health databases and biobanks.
This Declaration is intended to cover the collection, storage and use of identifiable data and biological material beyond the individual care of patients. The Declaration of Tapei fixes rules for protecting individuals’ rights in research biobanks and health databases through transparent and accountable governance mechanisms and arrangements. In particular, the Declaration of Taipei admits the practice of broad consent under certain conditions ensuring good governance of the samples and data (conditional broad consent). Generally, according to the WMA, “It is hoped the final guidance will benefit both the medical and wider research communities, as well as all those affected by such research by avoiding possible abuse or endangering the trust of those whose data is held”.