SIENNA D2.3: Survey of REC approaches and codes for genomics

This report describes the outcome of SIENNA task 2.3, Current coverage of ethical guidelines by professional organisations, ethics advisory groups, and research ethics committees for human genetics and genomics. For this task the SIENNA partners searched for documents which could give normative guidance (excluding legislation) for stakeholders in human genetic and genomics. Three kinds of documents were searched in different EU countries and internationally: professional ethics codes documents from professional groups and ethics advisory groups, and guidance documents on how to write research ethics protocols in different EU countries and internationally. Furthermore, representatives of research ethics committees have been asked for the following information in an online survey: to what extent are they aware of Human Genomics technologies and ethical issues associated with them, how do they currently approach these issues and do they have plans to more explicitly address them. This report is a descriptive document, which includes summaries and detailed lists of normative document searches in human genetics and genomics per country and internationally, as well as preliminary insights into REC members’ awareness and views of normative documents. This informative tool includes a list of over 150 documents addressing genetics and/or genomics in some normative capacity. These will be used to help inform work for task 2.7 (ethical frameworks) and work for WP5 (normative proposals by the consortium)