Clinical Ethics 

About: Clinical Ethics is an academic journal published by SAGE Publishing. The journal publishes majorly in the area(s): Health care & Medicine. It has an ISSN identifier of 1477-7509. Over the lifetime, 653 publications have been published receiving 3681 citations.

The zone of parental discretion: An ethical tool for dealing with disagreement between parents and doctors about medical treatment for a child

Abstract: Dealing with situations where parents’ views about treatment for their child are strongly opposed to doctors’ views is one major area of ethical challenge in paediatric health care. The traditional approach focuses on the child’s best interests, but this is problematic for a number of reasons. The Harm Principle test is regarded by many ethicists as more appropriate than the best interests test. Despite this, use of the best interests test for intervening in parental decisions is still very common in clinical settings and can lead to confusion. In this paper, I propose the Zone of Parental Discretion as a means of putting into practice the key ideas of the Harm Principle, in a clear, step-by-step process. The Zone of Parental Discretion provides a tool for ethical deliberation by clinicians and ethicists about all situations in which parents and doctors disagree about treatment of a child, whether parents are refusing medically recommended treatment, or requesting non-recommended treatment.

Beyond individualism: Is there a place for relational autonomy in clinical practice and research?:

Abstract: The dominant, individualistic understanding of autonomy that features in clinical practice and research is underpinned by the idea that people are, in their ideal form, independent, self-interested and rational gain-maximising decision-makers. In recent decades, this paradigm has been challenged from various disciplinary and intellectual directions. Proponents of 'relational autonomy' in particular have argued that people's identities, needs, interests - and indeed autonomy - are always also shaped by their relations to others. Yet, despite the pronounced and nuanced critique directed at an individualistic understanding of autonomy, this critique has had very little effect on ethical and legal instruments in clinical practice and research so far. In this article, we use four case studies to explore to what extent, if at all, relational autonomy can provide solutions to ethical and practical problems in clinical practice and research. We conclude that certain forms of relational autonomy can have a tangible and positive impact on clinical practice and research. These solutions leave the ultimate decision to the person most affected, but encourage and facilitate the consideration of this person's care and responsibility for connected others.

Why we wrote … Medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age:

Abstract: In October 2010, following a two-year enquiry, the Nuffield Council on Bioethics published a report on the ethics of ‘personalized health care’. The Council’s role is to examine ethical questions arising from developments in medical and biological research, to promote discussion and to make reports and recommendations. It looks for topics that are timely, where it can bring something new to the discussion and where it can have some impact on policy. This particular report takes as its starting point the convergence of a number of developments in medical technology with a set of social and political changes that seemed to the Council to have the potential to significantly transform our relationship with the healthcare system. In particular, we saw an environment in which individuals are being increasingly encouraged to take more responsibility for their own health, and in which the language of ‘choice’ is emerging as a key driver in the health-care system and in service development. These developments are captured, albeit not easily, in the notions of ‘responsibilization’ and ‘consumerization’ that the report goes on to discuss. At the same time we saw the increasing take-up of a cluster of digitally based technologies that together represent new ways of delivering health-care services, often preventive services, many of them outside of the usual setting of the general practitioner’s (GP’s) surgery or local hospital. These technologies, from genetic profiling to telemedicine, provide on the one hand the promise of more ‘personalized’ delivery of health care (of which more is discussed later), but at the same time opportunities for individuals to make decisions about and take greater control of their own health. This raised the idea that one can seek information, buy diagnostic or predictive services, order medicines or other health services and keep one’s own records, all without having to talk to a doctor or other health professionals. So among the questions that we wanted to ask were: How might this transform our expectations of more traditional health services? What might it mean for the NHS if people were increasingly expected to manage their own health? And what would it mean if people were to increasingly become consumers of a health system, rather than patients, or clients? And, of course, if we are going to consider these issues from an ethical perspective, what ethical principles, or framework, might we use? This was a difficult set of ideas to bring together into a coherent ‘topic’ for a Nuffield Council report, and the process of refining the Terms of Reference, and of finding a title for the report, were extremely challenging. Nevertheless, the expert Working Party that was appointed to carry out the work, and the Council itself, were convinced that in the midst of these social, political, medical and technological changes was an issue that needed to be more fully aired. The title that was chosen, reflecting both the broad ‘personalization’ question and the case studies that we chose to examine, was Medical profiling and online medicine: the ethics of ‘personalised healthcare’ in a consumer age. The practices, terms and concepts that we were working with did not have a well-formed definition that was commonly understood by all, and the title aims to be clear about what the report would address. ‘Personalized health care’ is in quotes because the questions of whether health care was indeed becoming more personalized, and what the implications of that might be, were still very much open. Having set out the terms that we were using, we nevertheless had to explain them. ‘Medical profiling’ is the term we use to describe new health-check services such as direct-to-consumer body imaging (e.g. computed tomography and magnetic resonance imaging scans) and personal genetic profiling for individual susceptibility to disease. ‘Online medicine’ includes developments in digital Hugh Whittall is the Director of the Nuffield Council on Bioethics. The Council’s role is to identify ethical questions raised by new developments in biological and medical research that are of public concern; to promote discussion; and to publish reports and make policy recommendations. Before joining the Nuffield Council in 2007, Hugh was at the Department of Health, where he was involved with the preparation and passage of the Human Tissue Act 2004, and the setting up of the Human Tissue Authority. Prior to that Hugh spent three years at the European Commission in Brussels, where he was involved in the funding and promotion of bioethics research, and was for several years Deputy Chief Executive of the Human Fertilisation and Embryology Authority.

What's in a name? : subjects, volunteers, participants and activists in clinical research

Abstract: The term research subject has traditionally been the preferred term in professional guidelines and academic literature to describe a patient or an individual taking part in biomedical research. In recent years, however, there has been a steady shift away from the use of the term 'research subject' in favour of 'research participant' when referring to individuals who take part by providing data to various kinds of biomedical and epidemiological research. This article critically examines this shift, reflecting on the different meanings evoked by the terms 'subject' and 'participant', as well as examining recent examples of patient activism in research. It concludes by suggesting that the wholesale unreflective adoption of the term 'participant' is inappropriate and provides instead a guide on how to determine the circumstances in which the terms subject, participant and activist should legitimately be used.

User involvement leads to more ethically sound research

Abstract: Involving service users and carers in clinical research can help to improve its quality and relevance. By defining the limits of ethical acceptability, improving research design and management, ens...