August 5, 2014
Sugano et al. published a proposed International Code of Conduct for Genomic and Health-Related Data Sharing in The HUGO Journal in June. Earlier this year, Knoppers et al. recommended, in an article published in Human Genetics, that a Code of Conduct be drawn up to promote data sharing within a human rights framework. IRDiRC reported on this last April. The latest draft of the Code was designed, under the aegis of the Global Alliance for Genomics and Health, by a consortium of research, patient advocacy, policy and bioethics communities including the Biobank Standardization and Harmonization for Research Excellence project (BioSHaRE), International Cancer Genome Consortium (ICGC), International Rare Disease Research Consortium (IRDiRC), International Society for Biological and Environmental Repositories (ISBER), Human Heredity and Health in Africa Initiative (H3Africa) and Public Population Project in Genomics and Society (P3G) among others.
Based on four founding principles regarding health, respect, research and transparency, the Code proposes guidelines to conduct research and share genomic data internationally with respect for human privacy and non-discrimination rights. Besides ethical values and the wish to avoid data misuse, the guidelines are designed to adapt to evolving genomic science and data sharing practices. The Code aims to establish a legal framework to be adopted by research organisations, institutions and industry conducting work using genomic and health-related data.
Read the open access article
OrphaNews July 17, 2014