Ethics of early detection of disease risk factors: A scoping review.

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.

Autonomous and informed decision-making: The case of colorectal cancer screening.

INTRODUCTION: It is increasingly considered important that people make an autonomous and informed decision concerning colorectal cancer (CRC) 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 (eighteen CRC screening participants and nine non-participants). 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.

When are infection risks of blood transfusion tolerable? Towards understanding the ethical views of stakeholders in the blood supply.

BACKGROUND AND OBJECTIVES: The perception of transfusion-transmitted infections (TTIs) is sensitive to various concerns besides the probability and impact of infection, and some of these concerns may be ethically relevant. This paper aims to advance thinking about blood safety policies by exploring and explaining stakeholders' reasons to consider TTI risks tolerable or intolerable. MATERIALS AND METHODS: Inspired by critical empirical ethics and phenomenological hermeneutics, we held interviews and focus group discussions to explore the moral experience of policymakers, hematologists, blood donors and recipients. Respondents were invited to discuss general concerns about the blood supply, to address the tolerability of TTI risks compared with other hazards and to comment on the costs of blood safety. Arguments for tolerance or intolerance towards TTI risks were analysed qualitatively. RESULTS: Stakeholders' views could be clustered into seven categories: (1) clinical impact; (2) probability of infection; (3) avoidability of infection; (4) cost and health benefits; (5) other consequences of safety measures; (6) non-consequentialist ethical arguments; and (7) stakeholders' interests. Various arguments were offered that resonate with current ethical thinking about blood safety. Assuming that resources spent on inefficient blood safety measures could be applied more beneficially elsewhere, for example, responders typically expressed tolerance towards TTI risks. Some other arguments seem novel, for instance arguments for risk intolerance based on the low probability of infection and arguments for risk tolerance if patients have a poor prognosis. CONCLUSION: Understanding the moral experience of stakeholders enriches ethical debate about blood safety and prepares developing more widely acceptable policies.

A Practice-Oriented Review of Health Concepts.

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 (philosophical) 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.

The Precautionary Principle and the Tolerability of Blood Transfusion Risks.

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 (any version of) 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.

An inventory of concerns behind blood safety policies in five Western countries.

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.

What is the responsibility of national government with respect to vaccination?

Given the ethical aspects of vaccination policies and current threats to public trust in vaccination, it is important that governments follow clear criteria for including new vaccines in a national programme. The Health Council of the Netherlands developed such a framework of criteria in 2007, and has been using this as basis for advisory reports about several vaccinations. However, general criteria alone offer insufficient ground and direction for thinking about what the state ought to do. In this paper, we present and defend two basic ethical principles that explain why certain vaccinations are the state's moral-political responsibility, and that may further guide decision-making about the content and character of immunisation programmes. First and foremost, the state is responsible for protecting the basic conditions for public health and societal life. Secondly, states are responsible for promoting and securing equal access to basic health care, which may also include certain vaccinations. We argue how these principles can find reasonable support from a broad variety of ethical and political views, and discuss several implications for vaccination policies.

Should we promote influenza vaccination of health care workers in nursing homes? Some ethical arguments in favour of immunization.

Although studies show the relation between influenza immunization of health care workers and the benefits for residents in nursing homes, compliance to vaccination is still low. In this article we explore and discuss two specific moral reasons for nursing home professionals to accept vaccination. These special reasons derive from two sources: the responsibilities they have as health professionals, and the responsibilities they have as a member of the collective.