Ulrik Kihlbom

This volume presents the ethical implications of risk information as related to genetics and other health data for policy decisions at clinical, research and societal levels. Ethical, Social and Psychological Impacts of Genomic Risk Communication examines the introduction of new types of health risk information based on faster, cheaper and larger sets of genetic or genomic analysis. Synthesising the results of a five-year interdisciplinary project, it explores the unsolved ethical and social questions around the sharing of this data, such as: What is best practice in risk communication? What are the normative presumptions and ethical consequences of an increased individual responsibility for ones' health? And how does one deal with the gap between the knowledge of risk and the lack of therapeutic options which often exist for complex diseases, such as dementia or some types of cancer? Drawing on contributions from over twenty experts in the field, this collection examines these questions from a liberal bioethics' perspective, advocating for contextual and cultural-sensitive ethical discussions. This book will be of great interest to students and scholars of theoretical and clinical medical ethics, medical sociology, risk communication and ethics of risk, as well as professionals in clinical genetics.

On March, 24, 2020, 818 cases of COVID-19 had been reported in New South Wales, Australia, and new cases were increasing at an exponential rate. In anticipation of resource constraints arising in clinical settings as a result of the COVID-19 pandemic, a working party of ten ethicists was convened at the University of Sydney to draft an ethics framework to support resource allocation decisions. The framework guides decision-makers using a question-and-answer format, in language that avoids philosophical and medical technicality. The working party met five times over the following week and then submitted a draft Framework for consideration by two groups of intensivists and one group of academic ethicists. It was also presented to a panel on a national current affairs programme. The Framework was then revised on the basis of feedback from these sources and made publicly available online on April 3, ten days after the initial meeting. The framework is published here in full to stimulate ongoing discussion about rapid development of user-friendly clinical ethics resources in ongoing and future pandemics.

Background Preconception Expanded Carrier Screening is a genetic test offered to a general population or to couples who have no known risk of recessive and X-linked genetic diseases and are interested in becoming parents. A test may screen for carrier status of several autosomal recessive diseases at one go. Such a program has been piloted in the Netherlands and may become a reality in more European countries in the future. The ethical rationale for such tests is that they enhance reproductive autonomy. The dominant conception of autonomy is individual-based. However, at the clinic, people deciding on preconception ECS will be counselled together and are expected to make a joint decision, as a couple. The aim of the present study was to develop an understanding of autonomous decisions made by couples in the context of reproductive technologies in general and of preconception ECS in particular. Further, to shed light on what occurs in reproductive clinics and suggest concrete implications for healthcare professionals. Main text Based on the shift in emphasis from individual autonomy to relational autonomy, a notion of couple autonomy was suggested and some features of this concept were outlined. First, that both partners are individually autonomous and that the decision is reached through a communicative process. In this process each partner should feel free to express his or her concerns and preferences, so no one partner dominates the discussion. Further, there should be adequate time for the couple to negotiate possible differences and conclude that the decision is right for them. The final decision should be reached through consensus of both partners without coercion, manipulation or miscommunication. Through concrete examples, the suggested notion of couple autonomy was applied to diverse clinical situations. Conclusions A notion of couple autonomy can be fruitful for healthcare professionals by structuring their attention to and support of a couple who is required to make an autonomous joint decision concerning preconception ECS. A normative implication for healthcare staff is to allow the necessary time for decision-making and to promote a dialogue that can increase the power of the weaker part in a relationship.

This is a PhD dissertation. Ethical particularism claims that any non-moral feature that in one situation is a reason why something is, for example, morally wrong, may in another situation be morally irrelevant or have an opposite moral valence. Ethical particularism entails, in other words, the non-existence of true or sound moral principles. Actions, persons, and situations acquire their moral features contextually in a way that escapes codification in principled terms. Particularism comes in this way in conflict with a classical approach to moral philosophy

Today, certain rule-violating behaviours, such as doping, are considered to be an issue of concern for the sport community. This paper underlines and examines the affective dimensions involved in moral responses to, and attitudes towards, rule-violating behaviours in sport. The key role played by affective processes underlying individual-level moral judgement has already been implicated by recent developments in moral psychological theories, and by neurophysiological studies. However, we propose and discuss the possibility of affective processes operating on a social level which may influence athletes' individual-level attitudes. We conclude that one-sided focus on individual rule-violating behaviour and individual sanctions may prove to be ineffective in coming to terms with the issue. In this regard we recommend a twofold approach by addressing underlying social dimensions, along with preventive measures through affect-oriented education

In this paper we will argue: (1) that scholars, regardless of their normative stand against or for genetic enhancement indeed have a moral/professional obligation to hold on to a realistic and up-to-date conception of genetic enhancement; (2) that there is an unwarranted hype surrounding the issue of genetic enhancement in general, and gene doping in particular; and (3) that this hype is, at least partly, created due to a simplistic and reductionist conception of genetics often adopted by bioethicists

This paper argues that, contrary to a common line of criticism followed by scholars such as Helga Kuhse, a particularistic version of virtue ethics properly elaborated, can provide sound moral guidance and a satisfactory account for moral justification of our opinions regarding, for instance, health care practice. In the first part of the paper, three criteria for comparing normative theories with respect to action‐guiding power are outlined, and it is argued that the presented particularistic version of virtue ethics actually can provide more guidance than the universalistic theories favoured by Kuhse and others. In the second part of the paper it is claimed that universalist normative theories have serious problems accounting for the role that moral principles are supposed to play in the justification, of moral opinions, whereas the present version of virtue ethics accommodates a plausible alternative idea of justification without invoking moral principles or eschewing objectivity.

The requirement of informed consent (IC) to medical treatments is almost invariably justified with appeal to patient autonomy. Indeed, it is common to assume that there is a conceptual link between the principle of respect for autonomy and the requirement of IC, as in the influential work of Beauchamp and Childress. In this paper I will argue that the possible relation between the norm of respecting (or promoting) patient autonomy and IC is much weaker than conventionally conceived. One consequence of this is that it is possible to exercise your autonomy without having the amount of and the kind of information that are assumed in the standard requirement of IC to medical treatments. In particular, I will argue that with a plausible conception of patient autonomy, the respect for and the promotion of patient autonomy are in certain circumstances better protected by giving patients the right to give their negatively informed consent to medical treatments