John Little

Background: Expanded newborn screening generates incidental results, notably carrier results. Yet newborn screening programmes typically restrict parental choice regarding receipt of this non-health serving genetic information. Healthcare providers play a key role in educating families or caring for screened infants and have strong beliefs about the management of incidental results. Methods: To inform policy on disclosure of infant sickle cell disorder (SCD) carrier results, a mixed-methods study of healthcare providers was conducted in Ontario, Canada, to understand attitudes regarding result management using a cross-sectional survey (N = 1615) and semistructured interviews (N = 42). Results: Agreement to reasons favouring disclosure of SCD carrier results was high (65.1%–92.7%) and to reasons opposing disclosure was low (4.1%–18.1%). Genetics professionals expressed less support for arguments favouring disclosure (35.3%–78.8%), and more agreement with arguments opposing disclosure (15.7%–51.9%). A slim majority of genetics professionals (51.9%) agreed that a reason to avoid disclosure was the importance of allowing the child to decide to receive results. Qualitatively, there was a perceived “duty” to disclose, that if the clinician possessed the information, the clinician could not withhold it. Discussion: While a majority of respondents perceived a duty to disclose the incidental results of newborn screening, the policy implications of these attitudes are not obvious. In particular, policy must balance descriptive ethics (ie, what providers believe) and normative ethics (ie, what duty-based principles oblige), address dissenting opinion and consider the relevance of moral principles grounded in clinical obligations for public health initiatives

Over the past decade, stem cell science has generated considerable public and political debate. These debates tend to focus on issues concerning the protection of nascent human life and the need to generate medical and therapeutic treatments for the sick and vulnerable. The framing of the public debate around these issues not only dichotomises and oversimplifies the issues at stake, but tends to marginalise certain types of voices, such as the women who donate their eggs and/or embryos to stem cell research and the patients who might benefit from its potential clinical outcomes. This paper draws on empirical research conducted on a recent stem cell policy episode in Australia. From the qualitative examination of 109 newspaper opinion editorials and twenty-three in-depth interviews, it is argued that these voices are marginalised because they are based on discourses that have less epistemological status in public debate. Our results suggest that the personal experiences of women and patients are marginalised by the alliances that form between more powerful discourse communities that use science as a source of authority and legitimation. It is argued that members of these communities establish legitimacy and assert authority in public debate by discursively deploying science in claims that marginalise other epistemologies. Implications are discussed along with suggestions for a more enriched and inclusive public debate

In the late twentieth century the impressive achievements of modern medicine are obvious, yet medicine seems to have failed to satisfy public expectation. Government regulation of hospitals and doctors is tightening in most Western countries and health funding is a divisive political issue. Medical complaints departments are increasingly busy. In the United States medical litigation has reached alarming levels, and a similar trend can be seen in other developed countries. Is there something wrong with medical research and practice? This book, written by a surgeon with more than thirty years experience of clinical medicine, examines what it is that doctors do, and what it is that patients expect of them. It finds that in the face of uncertainty, expectation and reality ofen often diverge. Starting from the communication difficulties that exist between doctors and patients, Humane Medicine explores the roles of science, ethics and the humanities in medical practice. It forcefully argues that more science cannot heal this rift, nor can better education in ethics. To foster better communication, medical teachers must change their philosophy and methods, so that value-laden issues in clinical medicine are interwoven with the necessary science. Professor Little outlines some possible ways to achieve this. This important book will be of interest to medical students and their teachers, clinicians, health policy planners and other readers concerned about the direction of the medical profession.

Despite optimistic reports about the results of amputation for advanced vascular disease, the patient’s assessment of advantages and disadvantages is seldom acknowledged. A detailed social study of 67 amputees has revealed considerable disparity between the patient’s views and those of the medical staff. About a third of the patients are forced to retire from active work by the amputation; about three-quarters report a serious decline in their social activities; only about half are really independent with prostheses in the long term; a quarter report severe and intractable symptoms related to their amputation stumps; only about a quarter feel that the amputation was definitely beneficial; and only about one in five feel that the medical staff have provided adequate support during their hospital stay. Amputees face physical and financial disability, isolation, and discomfort. Every effort must be made to explain the implications of amputation honestly and realistically and to ensure continuing patient assessment and support.

Testimonial injustice occurs when bias against the credibility of certain social identities results in discounting of their contributions to deliberations. In this analysis, we describe testimonial injustice against women and how it figures in macroallocation procedure. We show how it harms women as deliberators, undermines the objective of inclusivity in macroallocation and affects the justice of resource distributions. We suggest that remedial action is warranted in order to limit the effects of testimonial injustice in this context, especially on marginalised and disadvantaged groups, and propose three areas for action, whose implementation might feasibly be achieved by those immediately involved in macroallocation.

To agonise is to undergo great mental anguish through worrying about something, according to the New Oxford Dictionary of English. I suggest that agonising in this sense is a fundamental response to any ethical dilemma. It has a long intellectual and literary lineage. In this essay, I agonise over the dilemmas posed by street beggars, their intrusiveness and their appeal to our intuitive sense of social duty. I explore the discomfort we may feel at their presence, and the value that discomfort may have for the evolution of our ethical lives

Aesthetics is a vexed topic in philosophy, with a long history. For my purposes, an aesthetic experience is a foundational affective response to an object, to which terms such as “ugly”, “beautiful”, “pretty” or “harmonious” are applied. These terms are derived from a Discourse of aesthetics; some remain constant, others change from generation to generation. Aesthetics and ethics have been linked in Western thought since the days of Plato and Aristotle. This essay examines what is happening to that link in contemporary experience. It emphasises the ways in which the popular media exploit aesthetic appeal to penetrate their market, and to exploit and frame intuitive responses to current and past events. Production values, the artfulness of editors and the financial interests of producers and directors thus do much to determine contemporary aesthetic and ethical judgements. That which is beautifully presented invites the ethical involvement of the audience. Events whose images are beautifully presented constitute “hyperevidence”, a pre-judged, reinforced and amplified illusion of reality and participation. Understanding how aesthetic excellence draws audiences into ethical relationship with what is presented becomes an important part of education in ethics, including bioethics.