From cases to capacity? A critical reflection on the role of ‘ethical dilemmas’ in the development of dual-use governance

The dual-use issue is often framed as a series of paralyzing ‘dilemmas’ facing the scientific community as well as institutions which support innovation. While this conceptualization of the dual-use issue can be useful in certain contexts (such as in awareness-raising and as part of educational activities directed at the scientific community) its usefulness is more limited when reflecting on the governance and politics of the dual-use issue. Within this paper, key shortcomings of the dilemma framing are outlined. It is argued that many of the issues raised in the most recent debates about ‘dual-use’ bird flu research remain unresolved. This includes questions about the trajectories of certain lines of research, as well as broader trends in the practice and governance of science. This leads to difficult questions about current approaches to the dual-use issue within the US, as well as internationally

Synopsis of an integrated guidance for enhancing the care of familial hypercholesterolaemia: an Australian perspective

Summary: Introduction: Familial hypercholesterolaemia (FH) is a common, heritable and preventable cause of premature coronary artery disease, with significant potential for positive impact on public health and healthcare savings. New clinical practice recommendations are presented in an abridged guidance to assist practitioners in enhancing the care of all patients with FH. Main recommendations: Core recommendations are made on the detection, diagnosis, assessment and management of adults, children and adolescents with FH. There is a key role for general practitioners (GPs) working in collaboration with specialists with expertise in lipidology. Advice is given on genetic and cholesterol testing and risk notification of biological relatives undergoing cascade testing for FH; all healthcare professionals should develop skills in genomic medicine. Management is under-pinned by the precepts of risk stratification, adherence to healthy lifestyles, treatment of non-cholesterol risk factors, and appropriate use of low-density lipoprotein (LDL)-cholesterol lowering therapies, including statins, ezetimibe and proprotein convertase subtilisin/kexin type 9 (PCSK9) inhibitors. Recommendations on service design are provided in the full guidance. Potential impact on care of FH: These recommendations need to be utilised using judicious clinical judgement and shared decision making with patients and families. Models of care need to be adapted to both local and regional needs and resources. In Australia new government funded schemes for genetic testing and use of PCSK9 inhibitors, as well as the National Health Genomics Policy Framework, will enable adoption of these recommendations. A broad implementation science strategy is, however, required to ensure that the guidance translates into benefit for all families with FH