Bmc Med Ethics
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Issues of balancing data accessibility with ethical considerations and governance of a genomics research biobank, Generation Scotland, are explored within the evolving policy landscape of the past ten years. During this time data sharing and open data access have become increasingly important topics in biomedical research. Decisions around data access are influenced by local arrangements for governance and practices such as linkage to health records, and the global through policies for biobanking and the sharing of data with large-scale biomedical research data resources and consortia. ⋯ A commitment to open access in genomics research has found almost universal backing in science and health policy circles, but repositories of data and samples from human subjects may have to operate under managed access, to protect privacy, align with participant consent and ensure that the resource can be managed in a sustainable way. Data access committees need to be reflexive and flexible, to cope with changing technology and opportunities and threats from the wider data sharing environment. To understand these interactions also involves nurturing what is particular about the biobank in its local context.
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As part of its response to the 2014 Ebola outbreak in west Africa, the United Kingdom (UK) government established an Ebola treatment unit in Sierra Leone, staffed by military personnel. Little is known about the ethical challenges experienced by military medical staff on humanitarian deployment. We designed a qualitative study to explore this further with those who worked in the treatment unit. ⋯ We report the first systematic exploration of the ethical challenges face by a Western medical military in the international response to the first major Ebola outbreak. We offer unique insights into the military healthcare workers' experiences of humanitarian deployment. Many participants expressed motivations that gave them common purpose with civilian volunteers.