Predictive testing for Huntington’s disease was introduced in the late 1980s. It was offered reluctantly, however, because of the lack of treatment available for identified gene carriers and the potential for genetic discrimination—that is, the unfair and inappropriate treatment of a person or group on the basis of genetic information. In the linked cross sectional survey (doi:10.1136/bmj.b2175), Bombard and colleagues assess the nature and prevalence of genetic discrimination in a cohort of asymptomatic genetically tested and untested people at risk for Huntington’s disease.
Biobanks are increasingly seen as new tools for medical research. Their main purpose is to collect, store, and distribute human body materials. These activities are regulated by legal instruments which are heterogeneous in source (national and international), and in form (binding and non-binding). We analyse these to underline the need for a new model of governance for modern biobanks. The protection initially ensured by respect for fundamental rights will need to focus on more interactions with society in order to ensure biobanks' sustainability. International regulation is more oriented on ethical principles and traces the limits of the uses of genetics, while European regulation is more concerned with the protection of fundamental rights and the elaboration of standards for biobanks' quality assurance. But is this protection adequate and sufficient? Do we need to move from the biomedical research analogy to new forms of legal protection, and governance systems which involve citizen