Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy—as a right and as an ideal—we (...) describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so. (shrink)

Our knowledge of the human brain and the influence of pharmacological substances on human mental functioning is expanding. This creates new possibilities to enhance personality and character traits. Psychopharmacological enhancers, as well as other enhancement technologies, raise moral questions concerning the boundary between clinical therapy and enhancement, risks and safety, coercion and justice. Other moral questions include the meaning and value of identity and authenticity, the role of happiness for a good life, or the perceived threats to humanity. Identity and (...) authenticity are central in the debate on psychopharmacological enhancers. In this paper, I first describe the concerns at issue here as extensively propounded by Carl Elliott. Next, I address David DeGrazia’s theory, which holds that there are no fundamental identity-related and authenticity-related arguments against enhancement technologies. I argue, however, that DeGrazia’s line of reasoning does not succeed in settling these concerns. His conception of identity does not seem able to account for the importance we attach to personal identity in␣cases where personal identity is changed through enhancement technology. Moreover, his conception of authenticity does not explain the reason why we find inauthentic values objectionable. A broader approach to authenticity can make sense of concerns about changes in personal identity by means of enhancement technologies. (shrink)

Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice (...) behaviour and the traditional theory of informed consent. Responsible ways of dealing with or solving these problems are considered. To this end, patient decisions aids are discussed as suitable interventions to support autonomous decision-making. However, current PDAs demand certain improvements in order to protect and promote autonomous decision-making. Based on a conception of autonomy, we will argue which type of improvements are needed. (shrink)

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a medical condition or (...) more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity. (shrink)

Recent large-scale personal data loss incidents highlighted the need for public bodies to more securely handle confidential data. We surveyed trainees from all specialties in the Welsh Deanery for their knowledge and practice. All registered trainees were invited to participate in an online anonymised survey. There were 880 completed and non-duplicated responses (52.9% response rate). Responses were analysed using Microsoft Access. Over 40% (388/880 (44.1%)) did not use formal guidelines on storage or disposal of confidential data. The majority appeared to (...) dispose of confidential paper documents securely, that is, using shredders and white shredder bags. However, there were significant numbers of unmarked responses. Clinical documents, such as theatre lists, were taken home by 281/880 (31.9%) of trainees. The majority secured their computers (569/871 (65.3%)) by either not keeping patient identifiable data on them or using encryption. However, 302/871 (34.7%) did not adequately secure their computers. The surgical and anaesthetic specialties were least aware of formal confidentiality guidelines (95/178 (53.4%)) and 52/102 (51.0%) respectively) and least secured their computers (106/178 (59.6%) and 63/102 (61.8%) respectively). Education is needed to improve knowledge and practice of confidential data handling. This may be delivered through workshops during induction programmes or as part of European Computer Driving Licence (ECDL) modules. Training is especially indicated for the surgical and anaesthetic specialties. (shrink)

We show that arbitrary tautologies of Johansson’s minimal propositional logic are provable by “small” polynomial-size dag-like natural deductions in Prawitz’s system for minimal propositional logic. These “small” deductions arise from standard “large” tree-like inputs by horizontal dag-like compression that is obtained by merging distinct nodes labeled with identical formulas occurring in horizontal sections of deductions involved. The underlying geometric idea: if the height, h(∂), and the total number of distinct formulas, ϕ(∂), of a given tree-like deduction ∂ of a minimal (...) tautology ρ are both polynomial in the length of ρ, |ρ|, then the size of the horizontal dag-like compression ∂ᶜ is at most h(∂)×ϕ(∂), and hence polynomial in |ρ|. That minimal tautologies ρ are provable by tree-like natural deductions ∂ with |ρ|-polynomial h(∂) and ϕ(∂) follows via embedding from Hudelmaier’s result that there are analogous sequent calculus deductions of sequent ⇒ρ. The notion of dag-like provability involved is more sophisticated than Prawitz’s tree-like one and its complexity is not clear yet. Our approach nevertheless provides a convergent sequence of NP lower approximations of PSPACE-complete validity of minimal logic. (shrink)

Abstract Islam displaces the ancient idea of time as an implacable enemy with the scriptural image of time as the stage of judgment, a narrow bridge of accountability stretched between creation and eternity. The stark contrast of temporal evanescence with all the immutability of eternity challenges Muslim theologians and philosophers of the classic age. The dialectical theologians of the kalam describe time and change atomisti?cally and even occasionalistically, seeking to preserve the absoluteness of the contrast and to avoid compromising the (...) purity of God's creative act and the sheer facticity of its temporal effect. The falasifa, philosophers in the Greek tradition, use Platonic, Aristotelian, and Neoplatonic arguments to reconcile temporality with eternity. Stripped of argument, their emanative and archetypal schemes join the core symbolisms of Islam, but only when accommodated to the Qur'anic ideas of judgment and creation. (shrink)

The Toronto experience suggests that there may be several general lessons for academic health sciences complexes to learn from the Olivieri/Apotex affair regarding the ethics, independence, and integrity of clinical research sponsored by for profit enterprises. From a local perspective, the OAA occurred when there already was a focus on the complex and changing relationships among the University of Toronto, its medical school, the fully affiliated teaching hospitals, and off campus faculty because of intertwined interests and responsibilities. The OAA became (...) a catalyst that accelerated various systemic reforms, particularly concerning academic/industry relations. In this article, the evolving governance framework for the Toronto academic health sciences complex is reviewed and these policy and process reforms discussed. These reforms have created collaborative activity among research ethics boards and contract research offices of the partner institutions, and allowed the joint university/hospital ethics centre to play a role in governance and policy, while respecting the missions and mandates of the involved institutions. Although few of the policies are dramatically innovative, what is arguably novel is the elaboration of an overarching governance framework that aims to move ethics to a central focus in the academic complex. Time alone will tell how sustainable and effective these changes are. (shrink)

Argument-places play an important role in our dealing with relations. However, that does not mean that argument-places should be taken as primitive entities. It is possible to give an account of ‘real’ relations in which argument-places play no role. But if argument-places are not basic, then what can we say about their identity? Can they, for example, be reconstructed in set theory with appropriate urelements? In this article, we show that for some relations, argument-places cannot be modeled in aneutralway in (...) V[A], the cumulative hierarchy with basic ingredients of the relation as urelements. We argue that a natural way to conceive of argument-places is to identify them with abstract, structureless points of a derivative structure exemplified by positional frames. In case the relation has symmetry, these points may be indiscernible. (shrink)

Alongside concerns for animal welfare, concerns for land, water, and climate are undermining established food identities in many parts of the world. In Aotearoa New Zealand, agrifood relations are bound tightly into national identities and the materialities of export dependence on dairying and agriculture more widely. Dairy/ing identities have been central to national development projects and the politics that underpin them for much of New Zealand’s history. They are central to an intransigent agrifood political ontology. For the last decade, however, (...) they have been challenged by the identity politics of ethical food consumption. This paper explores the ensuing contests and asks how they are reshaping agrifood identities. We draw on interviews with 15 participants in Aotearoa New Zealand who have made dietary transitions that reduce or exclude dairy products. Our aim is not to identify a new post-dairying identity or claim a reconfigured national identity, but to examine the collision of production-consumption values in the context of a dominant place-based food identity. We ask how participants navigate contradictory commitments to becoming ‘good environmental citizens’ whilst remaining ‘good national citizens’. The paper offers insights for examining similar struggles elsewhere and the potential to shift agrifood relations and undermine entrenched political ontologies through ethical food consumption values. (shrink)

This article critically evaluates the Medicines and Healthcare products Regulatory Agency’s announcement, in March 2008, that GlaxoSmithKline would not face prosecution for deliberately withholding trial data, which revealed not only that Seroxat was ineffective at treating childhood depression but also that it increased the risk of suicidal behaviour in this patient group. The decision not to prosecute followed a four and a half year investigation and was taken on the grounds that the law at the relevant time was insufficiently clear. (...) This article assesses the existence of significant gaps in the duty of candour which had been assumed to exist between drugs companies and the regulator, and reflects upon what this episode tells us about the robustness, or otherwise, of the UK’s regulation of medicines. (shrink)

Background Residual dried blood spots (rDBS) from newborn screening programmes represent a valuable resource for medical research, from basic sciences, through clinical to public health. In Hong Kong, there is no legislation for biobanking. Parents’ view on the retention and use of residual newborn blood samples could be cultural-specific and is important to consider for biobanking of rDBS. Objective To study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese (...) parents. Methods A mixed-method approach was used to study the views and concerns on long-term storage and secondary use of rDBS from newborn screening programmes among Hong Kong Chinese parents of children 0–3 years or expecting parents through focus groups (8 groups; 33 participants) and a survey (n = 1012, 85% mothers) designed with insights obtained from the focus groups. We used framework analysis to summarise the themes as supportive factors, concerns and critical arguments for retention and secondary use of rDBS from focus group discussion. We used multiple logistic regression to assess factors associated with support for retention and secondary use of rDBS in the survey. Results Both in focus groups and survey, majority of parents were not aware of the potential secondary use of rDBS. Overall secondary use of rDBS in medical research was well accepted by a large proportion of Hong Kong parents, even if all potential future research could not be specified in a broad consent. However parents were concerned about potential risks of biobanking rDBS including leaking of data and mis-use of genetic information. Parents wanted to be asked for permission before rDBS are stored and mainly did not accept an “opt-out” approach. The survey showed that parents born in mainland China, compared to Hong Kong born parents, had lower awareness of newborn screening but higher support in biobanking rDBS. Higher education was associated with support in rDBS biobanking only among fathers. Conclusion Long-term storage and secondary use of rDBS from newborn screening for biomedical research and a broad consent for biobanking of rDBS are generally acceptable to Hong Kong parents given their autonomy is respected and their privacy is protected, highlighting the importance of an accountable governance and a transparent access policy for rDBS biobanks. (shrink)

The combination of breeding for increased production and the intensification of housing conditions have resulted in increased occurrence of behavioral, physiological, and immunological disorders. These disorders affect health and welfare of production animals negatively. For future livestock systems, it is important to consider how to manage and breed production animals. In this paper, we will focus on selective breeding of laying hens. Selective breeding should not only be defined in terms of production, but should also include traits related to animal (...) health and welfare. For this we like to introduce the concept of robustness. The concept of robustness includes individual traits of an animal that are relevant for health and welfare. Improving robustness by selective breeding will increase (or restore) the ability of animals to interact successfully with the environment and thereby to make them more able to adapt to an appropriate husbandry system. Application of robustness into a breeding goal will result in animals with improved health and welfare without affecting their integrity. Therefore, in order to be ethically acceptable, selective breeding in animal production should accept robustness as a breeding goal. (shrink)

Prominent thinkers such as Jurgen Habermas and Michael Sandel are warning that biomedical enhancements will undermine fundamental political values. Yet whether biomedical enhancements will undermine such values depends on how biomedical enhancements will function, how they will be administered and to whom. Since only few enhancements are obtainable, it is difficult to tell whether these predictions are sound. Nevertheless, such warnings are extremely valuable. As a society we must, at the very least, be aware of developments that could have harmful (...) consequences. Indeed, if important values were to be jeopardized, we should take appropriate measures to protect them. This paper focuses on four central values: solidarity, personal responsibility, equality and autonomy. It delineates the conditions under which biomedical enhancements would undermine these values. It also details the circumstances under which these values would be unaffected by enhancements as well as those under which they would be promoted. Specifying these conditions is valuable; it would enable society to prepare appropriate ethical guidelines and policy responses in advance. (shrink)