Taking roles in interdisciplinary collaborations: Reflections on working in post-ELSI spaces in the UK synthetic biology community

Based on criticism of the “ethical, legal and social implications” (ELSI) paradigm, researchers in science and technology studies (STS) have begun to create and move into “post-ELSI” spaces. In this paper, we pool our experiences of working towards collaborative practices with colleagues in engineering and science disciplines in the f eld of synthetic biology. We identify a number of dif erent roles that we have taken, been assumed to take, or have had foisted upon us as we have sought to develop postELSI practices. We argue that the post-ELSI situation is characterised by the demands placed on STS researchers and other social scientists to f uctuate between roles as contexts shift in terms of power relations, af ective tenor, and across space and over time. This leads us to posit four orientations for post-ELSI collaborative practices that could help establish more fruitful negotiations around these roles

Five rules of thumb for post-ELSI interdisciplinary collaborations

In this paper we identify five rules of thumb for interdisciplinary collaboration across the natural and social sciences. We link these to efforts to move away from the ‘ethical, legal and social issues’ framework of interdisciplinarity and towards a post-ELSI collaborative space. It is in trying to open up such a space that we identify the need for: collaborative experimentation, taking risks, collaborative reflexivity, opening-up discussions of unshared goals and neighbourliness

The Regeneration Games: Commodities, Gifts and the Economics of London 2012

This paper considers contradictions between two concurrent and tacit conceptions of the Olympic ‘legacy’, setting out one conception that understands the games and their legacies as gifts alongside and as counterpoint to the prevailing discourse, which conceives Olympic assets as commodities. The paper critically examines press and governmental discussion of legacy, in order to locate these in the context of a wider perspective contrasting ‘gift’ and ‘commodity’ Olympics – setting anthropological conceptions of gift-based sociality as a necessary supplement to contractual and dis-embedded socioeconomic organizational assumptions underpinning the commodity Olympics. Costbenefit planning is central to modern city building and mega-event delivery. The paper considers the insufficiency of this approach as the exclusive paradigm within which to frame and manage a dynamic socio-economic and cultural legacy arising from the 2012 games

Responsible innovation across borders: tensions, paradoxes and possibilities

In March 2014 a group of early career researchers and academics from São Paulo state and from the UK met at the University of Campinas to participate in a workshop on ‘Responsible Innovation and the Governance of Socially Controversial Technologies’. In this Perspective we describe key reflections and observations from the workshop discussions, paying particular attention to the discourse of responsible innovation from a cross-cultural perspective. We describe a number of important tensions, paradoxes and opportunities that emerged over the three days of the workshop

Patient organization involvement and the challenge of securing access to treatments for rare diseases:Report of a policy engagement workshop

Plain English summary Patients with rare diseases often help to develop new treatments for their conditions. But once developed, those treatments are sometimes priced too high for many patients to access them. We became aware that this is a problem in the course of a social science research project that examines the place of rare diseases in health policy. We therefore organized a two-day workshop to try and understand why this problem occurs and what might be done about it. The people who participated in our workshop were: representatives of rare disease patient organizations, experts in matters of drug regulation and assessment of new health technologies, consultants involved with companies producing treatments for rare diseases, and social scientists researching related issues. The main conclusions to emerge from the discussions were as follows: Problems of access to treatments for rare diseases are not just due to high prices; procedures for regulating, assessing and delivering new treatments also need to be better organized. Patients and patient organizations have much to contribute to this process. However, their resources are often very limited. Consequently, more needs to be done to help them use those resources as effectively as possible. In particular, regulators and healthcare providers need to ensure that their procedures are clear and efficiently managed, so as not to waste patient organizations’ time and money. Clearer guidance is needed on what patient organizations can do to provide evidence of the effectiveness of new drugs. Insights gained in tackling rare diseases might also be applicable to common disorders. Finally, the consequences of Brexit for UK policies on rare diseases urgently need to be assessed. Abstract Since the enactment of orphan drug legislation in the USA, Europe and several other countries, an increasing number of treatments for rare diseases have been developed and many of them been approved for marketing. However, such treatments tend to be priced very high, and access to effective treatments remains a major challenge for patients with rare diseases – despite active involvement of patients and their support organizations in various stages of basic and applied research and commercial development. In order to allow patients to benefit from treatments proved effective for their diseases, we need to better understand why this challenge persists, and what steps might be taken to address it. To that end, we organized a policy-engagement workshop, bringing together individuals and organizations with direct experience of trying to secure access to a treatment for a rare disease along with individuals with relevant expertise in regulatory and commissioning processes for new medicines. With additional input from social scientists who offered different perspectives on the value of patient involvement, the workshop aimed to initiate a dialogue among the participants about how to address the challenge in a sustainable manner. Discussions at the workshop stressed that active involvement of patients is as valuable in the regulatory and commissioning processes as in the research and development of new medicines. However, it also highlighted certain risks and costs associated with such involvement. These include the costs of adjusting to abrupt changes in regulatory and commissioning processes, and the risk of being perceived as too close to commercial interests. To optimize use of scarce resources and ensure continuing active involvement, such risks and costs need to be better managed. Participants also noted that, owing to advances in genomic technologies, common diseases are also becoming divided into rare sub-categories, which are equally eligible for orphan drug designation. Consequently, involvement of wider patient communities beyond rare disease communities will be critical for continuing discussions about patients’ involvement in regulatory and commissioning processes, and to consider how patients and their support organizations can best work with other stakeholders – including companies, regulators and policymakers – to ensure access to effective medicines