Michael Morrison

Genome editing enables very accurate alterations to DNA. It promises profound and potentially disruptive changes in healthcare, agriculture, industry, and the environment. This paper presents a multidisciplinary analysis of the contemporary development of genome editing and the tension between continuity and change. It draws on the idea that actors involved in innovation are guided by “sociotechnical regimes” composed of practices, institutions, norms, and cultural beliefs. The analysis focuses on how genome editing is emerging in different domains and whether this marks continuity or disruption of the established biotechnology regime. In conclusion, it will be argued that genome editing is best understood as a technology platform that is being powerfully shaped by this existing regime but is starting to disrupt the governance of biotechnology. In the longer term is it set to converge with other powerful technology platforms, which together will fundamentally transform the capacity to engineer life.

As the capacity to generate, store, aggregate and combine ever greater volumes and types of data about individuals, behaviours and interactions continues to expand apace, so too does the challenge of ensuring suitable and appropriate governance of that data. In broad terms, the challenge is simple; how to ensure the (public) benefits of data, such as improvements in service delivery or individual and collective well-being, while avoiding harms such as discrimination, injustice or placing undue burdens on individuals and groups. The difficulty, as ever, lies in the details. As Nicol et al observe, informed consent is important but does not replace the need for an appropriate governance framework that covers the wider ecosystem of data generation, use and reuse. Moreover, there is no one universal oversight mechanism for data sharing, but what counts as ‘appropriate’ must take into account the context and purpose of data use. In this regard, the study by Ford et al is an important and valuable contribution to our understanding of the specificities involved in sharing data contained within Electronic Health Records (EHRs) for clinical, quality improvement and comparative effectiveness research in healthcare. The paper provides empirical evidence, from a citizen’s jury, to support the intuition that transferring free text data from a clinical care setting to that of research, especially research conducted outside the National Health Service by academic researchers who are unlikely to have any direct relationship with the data providers-cum-research participants, is at risk of transgressing the contextual integrity of the initial data generation.