Current advances in assisted reproductive technologies aim to promote the health and well-being of future children. They offer the possibility to select embryos with the greatest potential of being born healthy (eg, preimplantation genetic testing) and may someday correct faulty genes responsible for heritable diseases in the embryo (eg, human germline genome modification (HGGM)). Most laws and policy statements surrounding HGGM refer to the notion of ‘serious’ as a core criterion in determining what genetic diseases should be targeted by these (...) technologies. Yet, this notion remains vague and poorly defined, rendering its application challenging and decision making subjective and arbitrary. By way of background, we begin by briefly presenting two conceptual approaches to ‘health’ and ‘disease’: objectivism (ie, based on biological facts) and constructivism (ie, based on human values). The basic challenge under both is sorting out whether and to what extent social and environmental factors have a role in helping to define what qualifies as a ‘serious’ disease beyond the medical criteria. We then focus on how a human rights framework (eg, right to science and right to the highest attainable health) could integrate the concepts of objectivism and constructivism so as to provide guidance for a more actionable consideration of ‘serious’. Ultimately, it could be argued that a human rights framework, by way of its legally binding nature and its globally accepted norms and values, provides a more universal foundation for discussions of the ethical, legal and social implications of emerging or disruptive technologies. (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)

The strong correlation between people’s socioeconomic position and health within high income countries is a well-documented fact. A person’s occupation, income and education level tell us a lot about that person’s prospects on a long and healthy life, such that we can speak of a ‘social gradient in health’, or a ‘socioeconomic health gap’. This association is often perceived to be unjust. Therefore, it is generally thought that governments should aim to reduce socioeconomic health inequalities. However, this idea needs ethical (...) justification, for it is not evident if and why exactly these inequalities are unjust. For instance, are inequalities in health unjust per se? Or because the underlying socioeconomic inequalities are unjust? And does justice require equal health levels, or a minimum level of health? What complicates the issue, is that the width of the health gap, or the steepness of the social gradient, depends on what health measures are used. Overall, the more subjective the measure, the greater the inequalities appear to be. But are all these measures equally morally relevant? This dissertation aims to give a better understanding of these philosophical questions. It does so by investigating the question of what we should understand by health in the first part, after which it addresses the question of how to evaluate socioeconomic health inequalities in the light of justice. The introduction begins with a description of the phenomenon of socioeconomic health inequalities, and how it has been addressed by politicians, epidemiologists and philosophers in the past and today. The chapter continues by formulating the central question of the dissertation – that of which health inequalities should be focused in the light of a concern with social justice. It explicates how this dissertation contributes to answering that question, by discussing the potential relation between the conceptualisation of health and justice evaluations, and by discussing which questions are addressed in each of the following chapters. The chapter 2 addresses the question of how health is conceptualised in the philosophical and public heath literature, and how theoretical concepts of health differ. It proposes to approach health concepts as a Wittgensteinian family of thick concepts and argues that while theories on health generally argue in favour of one specific concept, a comparison of concepts shows that we may need different concepts of health given the variety of health practices. By explicating the differences between five concepts of health, this chapter argues that each captures aspects of health that all seem relevant when we talk and think about health. Classifying these concepts based on their distinctions reveals them as members of a conceptual family: each of the discussed concepts differs from the others in at least one respect and resembles the others in several respects. Moreover, the discussion of the concepts shows that ‘health’ always both describes a condition and values that condition at the same time. Having both descriptive and evaluative dimensions, we can see health concepts as ‘thick concepts’. Given this evaluative dimension, it is important to reflect on the question of what understanding of health guides specific practices. Moreover, the distinctions revealed by the classification can serve as a conceptual toolbox for reflection on the assumptions and purposes of health practices. How such reflection could work is illustrated by a brief exploration of what health aspects are focused upon in three specific health practices. Chapter 3 presents a study into the question of how health is conceptualised by ordinary citizens and to what extent conceptualisations of health differ between socioeconomic groups. By making use of the method of concept mapping, this study analyses how different socioeconomic groups formulate their own answers regarding the question ‘what does health mean to you?’. It presents concept maps of health for three different socioeconomic groups living in the city of Utrecht that reveal that all groups have a multidimensional understanding of health. An interpretation of the concept maps reveals nuanced differences between groups. The multiple aspects of health were also ranked by importance. It appears that each group assigned most importance to mental health. All in all, the study shows that people in lower socioeconomic groups are more likely to show a conceptualisation of health that refers to 1) the absence of health threats, 2) a person within his/her circumstances, 3) the value of functional notions, and 4) an accepting attitude towards life. Chapter 4 addresses the question of what the theoretical and empirical study to concepts of health could imply for health equity practices. It does so by exploring further the suggestions made in chapters 2 and 3. Regarding the question of which health aspects should guide health equity policies, this chapter discusses the question of whether we should primarily look at subjective or objective health measures, and whether a universal or relative standard of health should be central. While justice-related concerns of impartiality and equal treatment may seem to favour an objective perspective and a universal health standard, it appears that we have good reason to account for the subjective perspective as well. It is also argued that a concern for recognition and participatory parity gives room for relative health standards. Th room for relative health standards confronts us with the question of how to deal with mechanisms like adaptive preferences that the concept maps reveal. It proposes a way out, by arguing for society-relative health standards. Chapter 5 examines the question of whether inequalities in health should be evaluated ‘directly’, thus independently of a distribution of their social determinants. It proposes a sufficientarian perspective, such that the central question of evaluation is that of whether everyone is – or can be – healthy enough. By discussing two sufficientarian approaches to health and social justice – by Powers & Faden and by Nussbaum – this chapter distinguishes two ways of setting a threshold level for health. Both approaches appear to provide an unsatisfactory basis for justice evaluations and lead us away from direct evaluation if we try to settle health minima that are less arbitrary. In anticipation to chapters 6 and 7, it is argued that the perspective of sufficient health for relational equality escapes this arbitrariness: compared to that of a decent human life, it better helps to answer both the question of what socioeconomic health inequalities a society is due to avoid, and the question of when socioeconomic health inequalities are unjust considering their consequences. Chapter 6 discusses to what extent Daniels’s theory of health justice provides a satisfactory answer to the question of what health inequalities a society is due to avoid. Daniels proposes an indirect evaluative approach by arguing that we should evaluate socioeconomic health inequalities in the light of Rawls’s principles of justice as fairness. That is, if socioeconomic inequalities are in accordance with fair equality of opportunity and with the difference principle, the corresponding health inequalities would be just. It is shown that the suggestion that Rawls’s principles regulate the social determinants of health neglects that not all social determinants of health belong to society’s basic structure as conceived of by Rawls and are thereby not subjected to the principles of justice. To acknowledge the social mechanisms leading to socioeconomic health inequalities in their full complexity, it is argued that we should broaden our understanding of society’s structure in accordance with Young’s notion of social structural processes. This renders the question of what health inequalities a society is due to avoid into a question of what we can expect from the side of the various actors that uphold the social structures that produce socioeconomic health inequalities. Lastly, it is discussed how a shift to Young’s theory completes the shift to non-ideal theorising that seem already initiated by Daniels, and that with this, the distinction between direct and indirect evaluation dissolves. Chapter 7 discusses to what extent equality in health is of instrumental value for a society of free and equals. It thus takes up the idea proposed in chapter 5, that an evaluation of the consequences of health inequalities is also due. Taking relational equality as an evaluative framework reveals three ways in which inequalities in life expectancy threaten this ideal. That is, via unequal risks to stigmatisation, unequal risks to unemployment and the risk of unequal pension enjoyments. It is thereby shown that these risks are especially great for those lower down the socioeconomic strata. It thus concludes that equality in health is of instrumental value to relational equality. The chapter continues to argue that our instrumental approach opens a new perspective: to mitigate the identified injustices by changing society, rather than by reducing inequalities in health. This is argued to be an advantage in the light of the realistic assumption that of the socioeconomic health inequalities will persist. The paper thus offers a complementary approach to both the evaluation and the mitigation of the injustice of socioeconomic inequalities in health. The discussion chapter summarises the central findings of the analyses of health concepts and discusses questions regarding the philosophical and practical merits of comparing theoretical health concepts, the need for developing new health measures or concepts and the importance or nonsense of studying citizen’s views on health. Repeating this for the dissertation’s second part, the central findings of the chapters on justice evaluation are summarised and followed by a discussion of questions and issues that have remained unaddressed so far. Here, central points of discussion are my take on rules of distribution, the distinction of direct and indirect evaluation, the role of ideal and non-ideal theory, the idea of relational equality, and personal responsibility for health. The chapter concludes by noting that also in the light of justice evaluations, all commonly used health measures are relevant for justice. Therefore, my recommendations for policy and further research entail that inequalities in each of these measures deserve attention by both policymakers and researchers. Specifically, policymakers and researchers should give attention to how exactly each of these health inequalities come about, in such a way that a discussion about the question of who can be assigned responsibility to alleviate them is well-informed; and both should give attention to the effects of health inequalities on the opportunities for people to live on equal standing, in such a way that when these opportunities are diminished, actions can be considered to aim to restore relational equality. (shrink)