Beyond regulatory approaches to ethics: making space for ethical preparedness in healthcare research.

Centralised, compliance-focused approaches to research ethics have been normalised in practice. In this paper, we argue that the dominance of such systems has been driven by neoliberal approaches to governance, where the focus on controlling and individualising risk has led to an overemphasis of decontextualised ethical principles and the conflation of ethical requirements with the documentation of 'informed consent'. Using a UK-based case study, involving a point-of-care-genetic test as an illustration, we argue that rather than ensuring ethical practice such compliance-focused approaches may obstruct valuable research. We call for an approach that encourages researchers and research communities-including regulators, ethics committees, funders and publishers of academic research-to acquire skills to make morally appropriate decisions, and not base decision-making solely on compliance with prescriptive regulations. We call this 'ethical preparedness' and outline how a research ethics system might make space for this approach.

Genetic analysis of the capsular biosynthetic locus from all 90 pneumococcal serotypes.

Several major invasive bacterial pathogens are encapsulated. Expression of a polysaccharide capsule is essential for survival in the blood, and thus for virulence, but also is a target for host antibodies and the basis for effective vaccines. Encapsulated species typically exhibit antigenic variation and express one of a number of immunochemically distinct capsular polysaccharides that define serotypes. We provide the sequences of the capsular biosynthetic genes of all 90 serotypes of Streptococcus pneumoniae and relate these to the known polysaccharide structures and patterns of immunological reactivity of typing sera, thereby providing the most complete understanding of the genetics and origins of bacterial polysaccharide diversity, laying the foundations for molecular serotyping. This is the first time, to our knowledge, that a complete repertoire of capsular biosynthetic genes has been available, enabling a holistic analysis of a bacterial polysaccharide biosynthesis system. Remarkably, the total size of alternative coding DNA at this one locus exceeds 1.8 Mbp, almost equivalent to the entire S. pneumoniae chromosomal complement.

Persuasive bodies: Testimonies of deep brain stimulation and Parkinson's on YouTube.

Contemporary publics actively engage with diverse forms of media when seeking health-related information. The hugely popular digital media platform YouTube has become one means by which people share their experiences of healthcare. In this paper, we examine amateur YouTube videos featuring people receiving Deep Brain Stimulation (DBS) for the treatment of Parkinson's disease. DBS has become a widely implemented treatment, and it is surrounded by high expectations that can create difficulty for clinicians, patients and their families. We examine how DBS, Parkinson's disease, and DBS recipients themselves, are delineated within these YouTube videos. The videos, we demonstrate, contain common compositional and stylistic elements that collectively represent DBS as a technological fix, and which accentuate the autonomy of the DBS recipient. The relational, interpersonal dimensions of chronic illness, and the complex impact of DBS on family dynamics, are elided. We therefore shed light on the means by which high expectations regarding DBS are sustained and circulated, and more generally, we illustrate how potentially powerful representations of medical technologies can emerge from the intersection of social media platforms, afflicted bodies and patient narratives.