Tolerance for blood transfusion risks is very low, as evidenced by the implementation of expensive blood tests and the rejection of gay men as blood donors. Is this low risk tolerance supported by the precautionary principle, as defenders of such policies claim? We discuss three constraints on applying the precautionary principle and show that respecting these implies tolerating certain risks. Consistency means that the precautionary principle cannot prescribe precautions that it must simultaneously forbid taking, considering the harms they might cause. (...) Avoiding counterproductivity requires rejecting precautions that cause more harm than they prevent. Proportionality forbids taking precautions that are more harmful than adequate alternatives. When applying these constraints, we argue, attention should not be restricted to harms that are human caused or that affect human health or the environment. Tolerating transfusion risks can be justified if available precautions have serious side effects, such as high social or economic costs. (shrink)

Whereas theories on health generally argue in favor of one specific concept, we argue that, given the variety of health practices, we need different concepts of health. We thus approach health concepts as a Wittgensteinian family of thick concepts. By discussing five concepts of health offered by theory, we argue that all capture something that seems relevant when we talk and think about health. Classifying these concepts reveals their family resemblances: each of these concepts differs from the others in at (...) least one respect and resembles the others in several respects. Moreover, our classification shows that “health” always both describes a condition and evaluates that condition at the same time. Having both descriptive and evaluative dimensions, we can see health concepts as “thick concepts.” It is because of this evaluative dimension that it is important to reflect on the question of what understanding of health guides specific practices. We show that the distinctions revealed by our classification can serve as a conceptual toolbox for reflection on the assumptions and purposes of particular health practices. Finally, we illustrate how such reflection could work out by briefly exploring three specific health practices. (shrink)

BACKGROUND: The availability of costly safety measures against transfusion-transmissible infections forces Western countries to confront difficult ethical questions. How to decide about implementing such measures? When are such decisions justified? As a preliminary to addressing these questions, we assessed which concerns shape actual donor blood safety policymaking in five Western countries. STUDY DESIGN AND METHODS: Our qualitative study involved determining which issues had been discussed in advisory committee meetings and capturing these issues in general categories. Appropriate documents were identified in (...) collaboration with local decision-making experts in Canada, Germany, the Netherlands, the United States, and the United Kingdom. The introduction of hepatitis B virus nucleic acid testing and selected measures against variant Creutzfeldt-Jakob disease, West Nile virus, and Q-fever were chosen as cases representing decision-making on safety measures with high costs and low or uncertain added safety. RESULTS: A broad inventory of concerns was established, including: 1) nine categories of advantages and disadvantages of candidate safety policies; 2) six kinds of difficulties in assessing risks and forecasting the effects of safety policies; 3) 13 decision-making principles; and 4) six kinds of practical barriers hampering the translation of candidate policies into decisions. CONCLUSION: Blood safety policymaking involves a wide variety of competing concerns, and approaches to reconcile these considerations are themselves contested. Developing a systematic decision-making approach requires ethical reflection on, among others, reasonable costs of safety and the value of transparency in public policy. (shrink)

Background Scientific and technological advancements in mapping and understanding the interrelated pathways through which biological and environmental exposures affect disease development create new possibilities for detecting disease risk factors. Early detection of such risk factors may help prevent disease onset or moderate the disease course, thereby decreasing associated disease burden, morbidity, and mortality. However, the ethical implications of screening for disease risk factors are unclear and the current literature provides a fragmented and case-by-case picture. Methods To identify key ethical considerations (...) arising from the early detection of disease risk factors, we performed a systematic scoping review. The Scopus, Embase, and Philosopher’s Index databases were searched for peer-reviewed, academic records, which were included if they were written in English or Dutch and concerned the ethics of (1) early detection of (2) disease risk factors for (3) disease caused by environmental factors or gene-environment interactions. All records were reviewed independently by at least two researchers. Results After screening 2034 titles and abstracts, and 112 full papers, 55 articles were included in the thematic synthesis of the results. We identified eight common ethical themes: (1) Reliability and uncertainty in early detection, (2) autonomy, (3) privacy, (4) beneficence and non-maleficence, (5) downstream burdens on others, (6) responsibility, (7) justice, and (8) medicalization and conceptual disruption. We identified several gaps in the literature, including a relative scarcity of research on ethical considerations associated with environmental preventive health interventions, a dearth of practical suggestions on how to address expressed concerns about overestimating health capacities, and a lack of insights into preventing undue attribution of health responsibility to individuals. Conclusions The ethical concerns arising with the early detection of risk factors are often interrelated and complex. Comprehensive ethical analyses are needed that are better embedded in normative frameworks and also assess and weigh the expected benefits of early risk factor detection. Such research is necessary for developing and implementing responsible and fair preventive health policies. (shrink)

Introduction It is increasingly considered important that people make an autonomous and informed decision concerning colorectal cancer screening. However, the realisation of autonomy within the concept of informed decision-making might be interpreted too narrowly. Additionally, relatively little is known about what the eligible population believes to be a 'good' screening decision. Therefore, we aimed to explore how the concepts of autonomous and informed decision-making relate to how the eligible CRC screening population makes their decision and when they believe to have (...) made a 'good' screening decision. Methods We conducted 27 semi-structured interviews with the eligible CRC screening population. The general topics discussed concerned how people made their CRC screening decision, how they experienced making this decision and when they considered they had made a 'good' decision. Results Most interviewees viewed a 'good' CRC screening decision as one based on both reasoning and feeling/intuition, and that is made freely. However, many CRC screening non-participants experienced a certain social pressure to participate. All CRC screening non-participants viewed making an informed decision as essential. This appeared to be the case to a lesser extent for CRC screening participants. For most, experiences and values were involved in their decision-making. Conclusion Our sample of the eligible CRC screening population viewed aspects related to the concepts of autonomous and informed decision-making as important for making a 'good' CRC screening decision. However, in particular the existence of a social norm may be affecting a true autonomous decision-making process. Additionally, the present concept of informed decision-making with its strong emphasis on making a fully informed and well-considered decision does not appear to be entirely reflective of the process in practice. More efforts could be made to attune to the diverse values and factors that are involved in deciding about CRC screening participation. (shrink)

Thanks to developments in genomics,dietary recommendations adapted to genetic riskprofiles of individual persons are no longerscience fiction. But what are the consequencesof these diets? An examination of possibleimpacts of genetically tailor-made diets raisesmorally relevant concerns that are analogous to(medical-ethical) considerations aboutscreening and testing. These concerns oftengive rise to applying norms for informedconsent and for the weighing of burdens andbenefits. These diets also have a broaderimpact, especially because food patterns arefull of personal, social and cultural meanings.Diets will change one's food patterns (...) and one'sattitude towards food, and this may implychanges in one's identity. We argue that suchan impact does not necessarily raise moralproblems. Moral concerns are, however, relevantif collective values and shared meanings infood practices are at issue. Therefore, thedevelopment of genetically tailor-made dietsdoes not merely require emphasis on weighingpersonal benefits and burdens and on informedconsent. It also asks for attention to andmoral reflection on the collective valuesinvolved in food practices. (shrink)