Informed choice is increasingly recognised as important in supporting patient autonomy and ensuring that people are neither deceived nor coerced. In cancer screening the emphasis has shifted away from just promoting the benefits of screening to providing comprehensive information to enable people to make an informed choice. Cancer screening programmes in the UK now have policies in place which state that it is their responsibility to ensure that individuals are making an individual informed choice. There is a need to evaluate (...) whether such policies mean that those people invited for screening are making informed choices, and how comprehensive information affects other variables such as uptake, cost effectiveness, and satisfaction. At the present time, there is no validated measure of informed choice in cancer screening. Such a measure could be used to evaluate the effectiveness of interventions to increase informed choice and levels of informed choice in a population invited for screening. It could encourage health professionals to be accountable. Factors important when measuring informed choice in cancer screening include an individual’s understanding of the limitations of screening, the ability to make an autonomous choice, and the difference between choice and behaviour. (shrink)

A great deal has been written about information that is or should be provided when seeking consent to medical research and treatment. Relatively little attention has been paid to information describing health promotion interventions. This paper critically examines some information material describing three different methods of encouraging early presentation of breast cancer in the UK: the NHS breast screening programme, breast self examination, and breast awareness. Findings from a content analysis of printed material and a series of focus group discussions (...) that included women who speak little or no English were organised around the Department of Health’s recommendations about the information which should be provided when seeking consent to treatment and research. They exposed inconsistencies, ambiguities, and gaps, which when taken together suggest both compliance and non-compliance are being achieved in the absence of informed consent. The findings also provide a starting point for a discussion about how informed consent to health promotion might be sought. (shrink)

Trust among current and future patients is essential for the success of biobank research. The submission of an informed consent is an act of trust by a patient or a research subject, but a strict application of the rule of informed consent may not be sensitive to the multiplicity of patient interests at stake, and could thus be detrimental to trust. According to a recently proposed law on “genetic integrity” in Sweden, third parties will be prohibited from requesting or seeking (...) genetic information about an individual. Cumbersome restrictions on research may be lifted, thus creating a more favourable climate for medical research. (shrink)

The health care systems are fairly similar in theScandinavian countries. The exact details vary, but inall three countries the system is almost exclusivelypublicly funded through taxation, and most (or all)hospitals are also publicly owned and managed. Thecountries also have a fairly strong primary caresector (even though it varies between the countries),with family physicians to various degrees acting asgatekeepers to specialist services. In Denmark most ofthe GP services are free. For the patient in Norwayand Sweden there are out-of-pocket co-payments for GPconsultations, (...) with upper limits, but consultations forchildren are free. Hospital treatment is free inDenmark while the other countries use a system without-of-pocket co-payment. There is a very strongpublic commitment to access to high quality healthcare for all. Solidarity and equality form theideological basis for the Scandinavian welfare state.Means testing, for instance, has been widely rejectedin the Scandinavian countries on the grounds thatpublic services should not stigmatise any particulargroup. Solidarity also means devoting specialconsideration to the needs of those who have lesschance than others of making their voices heard orexercising their rights. Issues of limited access arenow, however, challenging the thinking about a healthcare system based on solidarity. (shrink)

ABSTRACT This article attempts to show a way in which social science research can contribute in a meaningful and equitable way to philosophical bioethics. It builds on the social science critique of bioethics present in the work of authors such as Renée Fox, Barry Hoffmaster and Charles Bosk, proposing the characteristics of a critical bioethics that would take social science seriously. The social science critique claims that traditional philosophical bioethics gives a dominant role to idealised, rational thought, and tends to (...) exclude social and cultural factors, relegating them to the status of irrelevancies. Another problem is the way in which bioethics assumes social reality divides down the same lines/categories as philosophical theories. Critical bioethics requires bioethicists to root their enquires in empirical research, to challenge theories using evidence, to be reflexive and to be sceptical about the claims of other bioethicists, scientists and clinicians. The aim is to produce a rigorous normative analysis of lived moral experience. (shrink)

Empirical findings from a Swedish longitudinal screening study show that many of the research subjects had a limited understanding of the study. Nevertheless they were satisfied with the understanding they had and found it sufficient for informed continued participation. Were they wrong? In this paper, it is argued that the kind of understanding that is morally required depends partly on the kind of understanding on which the research subjects want to base their decisions, and partly on what kind of knowledge (...) they lack. Researchers must ensure that the information process is not flawed and that participants receive the information they want. To achieve this, new information efforts may be needed. Researchers must also ensure that research subjects have knowledge about aspects of importance to them. Lack of understanding may, however, be the result of conscious choices by research subjects to disregard some of the information because it is not important to them. Such choices should normally be respected. (shrink)

Principle-based formulations of bioethical theory have recently come under increasing scrutiny, particularly insofar as they give prominence to personal autonomy. This essay critiques the dominant conceptualization of autonomy and urges an alternative formulation freed from the individualistic assumptions that pervade the prevailing framework. Drawing on feminist perspectives, I discuss the need for a vision of patient autonomy that joins relational experiences to individuality and acknowledges the influence of patterns of power and authority on the exercise of patient agency. Deficiencies in (...) the current models of science and social relations guiding medical practice are analyzed, particularly (1) the tendency to disregard the patients self-knowledge and (2) failure to recognize limitations on the generalizability of medical knowledge. Models of social relations such as mothering and friendship are explored to advance a conception of autonomy better suited to the practical activities of medicine. In conclusion, I consider how acknowledgement of the specificity and complexity of social relations can contribute to reconfiguration of other principles comprising the standard framework of bioethics, particularly beneficence, justice, and equality. (shrink)

ABSTRACT As bioethics emerged in the 1960s and 1970s and began to have enormous impacts on the practice of medicine and research – fuelled, by broad socio‐political changes that gave rise to the struggle of women, African Americans, gay men and lesbians, and the antiauthoritarian impulse that characterised the New Left in democratic capitalist societies – little attention was given to the question of the ethics of public health. This was all the more striking since the core values and practices (...) of public health, often entailing the subordination of the individual for the common good, seemed opposed to the ideological impulses of bioethics. Of what relevance is autonomy‐focused bioethics for public health, with its mix of justifications including those that are either implicitly or explicitly paternalistic or that seek to impose strictures on individuals and communities in the name of collective welfare? To examine the deep divide between the central commitments of bioethics and the values that animate the practice of public health, we focus on a series of controversies implicating the concepts of privacy, liberty, and paternalism. Recognising the role of moral values in decision‐making was a signal contribution of bioethics in its formative period. Over the past three decades a broad array of perspectives emerged under the rubric of bioethics but individualism remains central. As we commence the process of shaping an ethics of public health, it is clear that bioethics is the wrong place to start when thinking about the balances required in defence of the public's health. (shrink)

There is currently a lively debate about the nature of trust and the conditions necessary to establish and sustain it. Yet, to date, there has been little systematic exploration of these issues. While social scientists are beginning to tease out the nature of trust, there are few published accounts exploring these themes through empirical work There is thus a need for empirically based research, which intelligently unravels this complexity to support all stakeholders in the health arena. This multidisciplinary volume addresses (...) this gap by contributing substantively to the exploration of trust in the experience, practice and organization of health. The authors examine a range of significant conceptual themes in relation to trust, including trust and auditing, consent, expert knowledges and social capital. Through reflecting on these emergent themes, the collection is a landmark contribution to the theoretical and empirical work on trust. (shrink)