Can bioethics be an honest way of making a living?:A reflection on normativity, governance and expertise

The authority of bioethics as a field of inquiry and of bioethicists as scholars with a distinctive expertise is being questioned on various fronts. Sarah Franklin’s 2019 Nature commentary ‘Ethical research – the long and bumpy road from shirked to shared’ is the latest example . In this paper, we respond to these challenges by focusing on two key issues. First, we discuss the theory and practice of bioethics. We argue that both of these endeavours are fundamental components of this field of inquiry and that bioethics cannot be reduced to the contribution that it makes to the production of biopolicy, as Franklin suggests. Second, we contend that bioethicists have distinctive skills and knowledge that place them at an epistemic advantage in discussing normative questions. Hence, we reject views that deny the specific contribution that bioethicists can bring to assessing the ethics and governance of science and technology. We conclude by arguing that—despite formal and substantive differences between disciplines—philosophers, social scientists and other scholars should join forces and engage in critical friendships rather than turf wars to move towards the just governance of science and technology

Ethics, genetic testing, and athletic talent: children's best interests, and the right to an open (athletic) future

In this paper we discuss the ethics of genetics-based talent identification programs in sports. We discuss the validity and reliability of the tests and the claims made by direct to consumer companies, before presenting a range of ethical issues concerning child-parent/guardian relations raised by these tests, which we frame in terms of parental/guardian duties, children's rights, and best interests. We argue that greater ethical emphasis needs to be put on the parental decision on the wellbeing on the child going forward, not on ex post justifications on the basis of good and bad consequences. Best interests decisions made by a third party seem to comprise both subjective and objective elements, but only a holistic approach can do justice to these questions by addressing the wellbeing of the child in a temporal manner and taking into account the child's perspective on its wellbeing. Such decisions must address wider questions of what a good (sports)parent ought do to help the child flourish and how to balance the future-adult focus necessary to nurture talent with the wellbeing of the child in the present. We conclude that current genetic tests for “talent” do not predict aptitude or success to any significant degree and are therefore only marginally pertinent for talent identification. Claims that go beyond current science are culpable and attempt to exploit widespread but naïve perceptions of the efficacy of genetics information to predict athletic futures. Sports physicians and health care professionals involved in sport medicine should therefore discourage the use of these tests

Investigating Public trust in Expert Knowledge:Narrative, Ethics, and Engagement

“Public Trust in Expert Knowledge: Narrative, Ethics, and Engagement” examines the social, cultural, and ethical ramifications of changing public trust in the expert biomedical knowledge systems of emergent and complex global societies. This symposium was conceived as an interdisciplinary project, drawing on bioethics, the social sciences, and the medical humanities. We settled on public trust as a topic for our work together because its problematization cuts across our fields and substantive research interests. For us, trust is simultaneously a matter of ethics, social relations, and the cultural organization of meaning. We share a commitment to narrative inquiry across our fields of expertise in the bioethics of transformative health technologies, public communications on health threats, and narrative medicine. The contributions to this symposium have applied, in different ways and with different effects, this interdisciplinary mode of inquiry, supplying new reflections on public trust, expertise, and biomedical knowledge

Crispr Pigs, Pigoons and the Future of Organ Transplantation: An Ethical Investigation of the Creation of Crispr-Engineered Humanised Organs in Pigs

Bioethics operates on two dimensions: one is the future, i.e. the temporal subject of bioethicists’ speculations, and one is the present, the point of influence of bioethics. In order for bioethics to operate on two dimensions, bioethicists have to resort to biofutures, or imaginaries of possible futures populated by extrapolations of uses of emerging biotechnologies. This paper discusses the possible biofuture in which we are able to grow humanised organs in pigs for the purposes of human transplantation, which has brought xenotransplantation closer to the present thanks to experiments conducted by George Church at MIT, which use CRISPR genome editing technologies to edit out a number of retroviruses that are endogenous in pigs and can pose a risk of human infection in xenotransplantation. This paper juxtaposes the biofuture imagined by Church, where organ transplants become routine and are customized on the basis of the recipient, with the biofuture imagined by Canadian author Margaret Atwood in her 2003 novel Oryx and Crake, who in a sense predicted the advent of CRISPR pigs with her ‘pigoons’, engineered pigs with multiple organs also for the purpose of human transplantation. Although feeding on the same material or elementary building blocks, Church and Atwood end up with opposing outlooks on the moral implications of using animals as biofactories. While bioethicists often rely on biofutures imagined by scientists, with the possible risk of buying into epistemic scientism and reinforcing socio-technical expectations, in this paper I argue that science fiction, or speculation fiction, has an important role to play in providing narrative fodder for alternative imagined biofutures

La bioetica come professione e l'expertise in materia bioetica: riflessioni pedagogiche sullo sviluppo di un curriculum di Master di secondo livello in bioetica e scienze sociali in ambito anglosassone

In questo saggio delineo alcune riflessioni sul bioeticista di professione: chi è, cosa fa, e con quali competenze. Nella prima parte del saggio vado a delineare le ragioni che hanno spinto alla creazione del Master di II livello in Bioetica e Società al King's College a Londra nel 2013, e le riflessioni pedagogiche che hanno informato le decisioni curriculari. Nella seconda parte di questo saggio mi occupo di specificare le competenze relazionali e contributive che vanno a contraddistinguere l'expertise in materia bioetica, per poi andare a concludere discutendo delle competenze aggiuntive richieste in ambito di expertise in materia di etica clinica e di etica della ricerca clinica. Le tesi contenute in questo articolo combinano le mie riflessioni personali basate sulla mia esperienza pluridecennale come professore e direttore di un programma di Master di secondo livello al King's College London, con la letteratura anglosassone sul tema dell'expertise e delle competenze in ambito di bioetica. Concludo con pro e contro nel formalizzare le competenze dell'esperto di bioetica. Nonostante difficoltà oggettive nella formalizzazione delle competenze in maniera retrospettiva, i pro appaiono maggiori dei contro e appare necessario procedere a una formalizzazione prospettiva per assicurare che si ragioni bene in una materia così essenziale alla salute pubblica

Online information as a decision making aid for cancer patients: recommendations from the Eurocancercoms project.

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