Considerations of the notion of preparedness have come to the fore in the recent pandemic, highlighting a need to be better prepared to deal with sudden, unexpected and unwanted events. However, the concept of preparedness is also important in relation to planned for and desired interventions resulting from healthcare innovations. We describe ethical preparedness as a necessary component for the successful delivery of novel healthcare innovations, and use recent advances in genomic healthcare as an example. We suggest that practitioners and (...) organisations charged with delivering innovative and ambitious healthcare programmes can only succeed if they are able to exhibit the attribute of ethical preparedness. (shrink)

The UK Chief Medical Officer’s 2016 Annual Report, Generation Genome, focused on a vision to fully integrate genomics into all aspects of the UK’s National Health Service. This process of integration, which has now already begun, raises a wide range of social and ethical concerns, many of which were discussed in the final Chapter of the report. This paper explores how the UK’s 100,000 Genomes Project —the catalyst for Generation Genome, and for bringing genomics into the NHS—is negotiating these ethical (...) concerns. The UK’s 100 kGP, promoted and delivered by Genomics England Limited, is an innovative venture aiming to sequence 100,000 genomes from NHS patients who have a rare disease, cancer, or an infectious disease. GEL has emphasised the importance of ethical governance and decision-making. However, some sociological critique argues that biomedical/technological organisations presenting themselves as ‘ethical’ entities do not necessarily reflect a space within which moral thinking occurs. Rather, the ‘ethical work’ conducted by organisations is more strategic, relating to the politics of the organisation and the need to build public confidence. We set out to explore whether GEL’s ethical framework was reflective of this critique, and what this tells us more broadly about how genomics is being integrated into the NHS in response to the ethical and social concerns raised in Generation Genome. We do this by drawing on a series of 20 interviews with individuals associated with or working at GEL. (shrink)

Background Biobanks are a key aspect of healthcare research; they enable access to a wide range of heterogenous samples and data, as well as saving individual researchers time and funds on the collection, storage and/or curation of such resources. However, biobanks are also associated with impacts associated with a depletion of natural resources (energy, water etc.) production of toxic chemicals during manufacturing of laboratory equipment, and effects on biodiversity. We wanted to better understand the biobanking sector in the UK as (...) a first step to assessing the environmental impacts of UK biobanking. Methods We explored the sample storage infrastructure and environmental sustainability practices at a number of UK biobanks through a mixed methods quantitative and qualitative approach, including information gathering on an online platform, and eight in-depth interviews. Results Environmental sustainability was deprioritised behind biobanks’ financial sustainability practices. Nevertheless, both often aligned in practice. However, there was a tendency towards underutilisation of stored samples, the avoidance of centralisation, and providing accessibility to biosamples, and this conflicted with valuing sustainability goals. This related to notions of individualised and competitive biobanking culture. Furthermore, the study raised how value attachments to biosamples overshadows needs for both financial and environmental sustainability concerns. Conclusions We need to move away from individualised and competitive biobanking cultures towards a realisation that the health of the publics and patients should be first and foremost. We need to ensure the use of biosamples, ahead of their storage (‘smart attachments’), align with environmental sustainability goals and participants’ donation wishes for biosample use. (shrink)