2256 lines
79 KiB
YAML
2256 lines
79 KiB
YAML
abstract: 'The concept of solidarity has recently come to prominence in the
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healthcare literature. When understood descriptively, it usefully
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supplements other conceptions like reciprocity (e.g., between healthcare
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providers and their patients), patient-centered medicine, or care
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ethics. In the context of health insurance (especially in Europe), an
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appeal to solidarity effectively addresses the problem of the motivation
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for taking seriously the medical needs of compatriots by emphasizing
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shared vulnerabilities and needs. If understood more broadly as human
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solidarity, the notion proposes attention to the health of distant
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others, as a condition of their dignity. And taken normatively, it fills
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in some of the requirements of the abstract norms of justice and
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equality by advocating `standing with'' or aiding fellow community
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members or possibly also distant others in regard to their medical
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needs. Solidarity may be understood be required either for its own sake,
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when taken as a separate norm, or as a way to realize the demands of
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justice and equal treatment in matters of health. The current focus on
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solidarity in the healthcare literature is useful and important, in my
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view. Yet, to my mind, the understanding of it tends to be unduly
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restricted. For one thing, the literature has most often focused on
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solidarity within nation-states, as a relation among compatriots that
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supports universal healthcare. The notion is also seen as having import
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for contemporary developments like large health databases, biobanks,
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personalized medicine, and organ donation. A few authors extend
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solidarity more widely, particularly in interpreting the Universal
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Declaration on Bioethics and Human Rights, with its reference to
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solidarity in Article 13 and its implication in some other articles.
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Yet, these various uses of the conception of solidarity in healthcare
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have thus far tended to either disregard or even to actively eschew its
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traditional meanings of labor solidarity or social movement solidarity,
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or indeed, any use of the term that posits an `other'' against which
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solidarity might be practiced (although it is generally recognized that
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the concept is bounded and particular). I suggest that the neglect of
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some important historical (and contemporary) senses of solidarity-and
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especially social movement solidarity-leads to a blind spot in the
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current bioethical theories. An alternative reading of solidarity in
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healthcare drawing on social movement and labor contexts would highlight
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a crucial dimension of contemporary healthcare provision, namely,
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structural injustice. Systemic forms of injustice militate against
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adequate healthcare for all, and suggest the need for solidaristic
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action to struggle against and to remedy existing entrenched
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inequalities. Omitting an account of structural injustice and even of
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justice itself from the core meaning of solidarity leads, I argue, to a
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rather weak and too easy sense of what solidarity requires, and is ill
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suited to serve as an adequate normative guide for improving healthcare
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in the present. This is the case most obviously in regard to healthcare
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in the United States with its unequal health system, but I suggest it
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applies more generally and even in Europe, and certainly if we take the
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obligations of solidarity to extend transnationally. While traditional
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notions of solidarity within existing communities and nation-states
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remain significant, I believe that an adequate conception of solidarity
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needs to show how it is connected to justice.
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It also needs to extend transnationally, given our increasingly
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interconnected world, which raises difficult questions of the relation
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between national and transnational solidarities, and the justifications
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we can give for prioritizing the health and healthcare of those closer
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to us. In this essay, I will begin by briefly indicating how the
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existing approaches to solidarity in healthcare, despite their trenchant
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analyses of many of its features and applications, remain abstract and
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without sufficient critical import by not directly considering the
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impact of structural injustices. I will then attempt to sketch how an
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understanding of institutional barriers to equal treatment, along with
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the commitment to achieving justice concretely, need to inform not only
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our application of solidarity in practice but also our understanding of
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the core meaning of solidarity itself. I will not be able to address
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here the complex question of the priority that is often given to the
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needs of those close to us and the related question of negotiating our
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obligations to engage in national vs. transnational solidarity efforts,
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but I have taken this up in other work. In a series of books and
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articles, Barbara Prainsack and Alena Buyx have taken the lead in
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calling attention to the relevance of the concept of solidarity for
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bioethics. They have articulated a general conception and sketched
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several potential implications for healthcare and bioethics more widely.
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They advance the following definition: `Solidarity is an enacted
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commitment to carry ``costs{''''} (financial, social, emotional, or
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otherwise) to assist others with whom a person or persons recognize
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similarity in a relevant respect.'' Prainsack and Buyx usefully develop
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the notion of solidarity as a practice and see it as operating within
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three domains: the interpersonal, the group, and the
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administrative/legal. Their conception is largely descriptive, although
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it has some normative preconditions, and involves what they call
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axiological/axiomatic normativity of some sort. The difficulty of this
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latter phrase aside, Prainsack and Buyx seem willing to countenance
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morally negative expressions of solidarity (e.g., among members of a
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gang or even a terror group) in the interest of preserving the analytic
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utility of the concept. Moreover, they sharply distinguish solidarity
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from justice, regarding the latter as deontic and thus as not part of
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the concept of solidarity itself. But given their attention to the
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context of the practice of solidarity, they expect that norms like
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justice would be brought to bear, presumably to qualify the practice of
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solidarity. Since Prainsack and Buyx''s approach is perhaps the most
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highly developed conception of solidarity in the bioethics literature,
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it can serve as a useful foil for elaborating my own account, drawing on
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and extending my previous work on this theme. The main strength of their
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approach, it seems to me, lies in its aptness for understanding
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solidarity as a group practice, and especially within nation-states.
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Indeed, their view, with its emphasis on bearing costs to assist others
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within a group, seems to line up primarily with what has been called a
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`civic solidarity'' conception, one that has been prominent in connection
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with European welfare states. The idea that solidarity can come to be
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entrenched administratively and legally also points to the dominance of
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that European model in their understanding (though their conception is
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supplemented with what they call interpersonal solidarity).
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Importantly, these authors'' emphasis on solidarity as a practice
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helpfully ties solidarity to action. They suggest that this action
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orientation serves to distinguish solidarity from empathy or other
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sentiments. However, the centrality in their account of bearing `costs''
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with the aim of assisting others brings the model close to the Christian
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tradition of solidarity with its emphasis on relieving suffering and
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aiding the poor. Their perspective likewise focuses on individual
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activity in aiding others, rather than on collective action. (The term
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`costs'', however, has financial connotations that do not sit altogether
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easily with this religious perspective.) The Christian tradition of
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solidarity can be distinguished (at least in its older forms) from the
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alternative socialist tradition of labor union solidarity, where
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solidarity is aimed at promoting shared interests and overcoming
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domination and exploitation with the aim of achieving justice. In this
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article, I will suggest that this latter understanding of solidarity
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introduces an important normative aspect of the concept of solidarity,
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one that is largely lacking in Prainsack and Buyx''s account. Although
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Prainsack and Buyx are at pains to differentiate between solidarity and
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charity (which is indeed an important distinction), I find their
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argument on this point unconvincing. They claim that charity is marked
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by assistance for others who are perceived as `different'' from oneself,
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rather than as being `similar in a relevant respect.'' The problem is
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that this distinction could be seen as having a question-begging aspect,
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inasmuch as the authors seem to posit by definition that in cases where
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people choose to donate to charities for people with a similar condition
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to their own (e.g., a particular illness), they are in fact acting in
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solidarity rather than charity. At the very least, more argument would
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be needed to establish the difference in question. Indeed, the issue of
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what is perceived as `similar'' and what counts as `a relevant respect,''
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remains rather vague in their account. Clearly, perceptions of
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similarity and difference are notably various and variable. Can the
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perception of similarity with another in a relevant respect always be
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explained in a way that itself makes no reference to the solidarity that
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is supposed to follow from it, as it would have to be to avoid
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circularity? Is it, for example, the abstract status of being a fellow
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citizen that generates solidarity or does our tie to these others
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already presuppose pre-existing solidarities, e.g., as being members of
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our nation? The account would need to explicitly address questions such
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as these and also explicate what counts as `similar in a relevant
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respect'' to concretize this notion and give it real utility. In my own
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view, as developed elsewhere and as will become clear below, the
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distinction of solidarity from charity turns rather on the connection
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that solidarity bears to justice, and to the overcoming of domination
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and exploitation. It can also be seen to involve reciprocity in a sense
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to be indicated, which charity does not. Indeed, Prainsack and Buyx
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sharply distinguish between solidarity and reciprocity, taking the
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latter in the narrow sense of what I have elsewhere called instrumental
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reciprocity or `tit for tat'' reciprocity.
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In my view, reciprocity is a fundamental social relation that in fact
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takes several forms besides such instrumental ones, and I believe that
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reciprocity remains important for properly understanding solidarity.
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This potential for reciprocity helps to distinguish solidarity from
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charity, since charity evidently does not presuppose reciprocation from
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the needy or those aided. The reciprocity that applies to solidarity
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actions can be seen in the notion of mutual aid, which has been part of
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traditional understandings of labor and social movement solidarity. The
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mutuality involved here is itself a developed form of reciprocity, but
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one characterized not instrumentally in the manner of Prainsack and
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Buyx. Rather, reciprocity and the solidarity that incorporates it are
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here seen as aiming at improving the situation of the other, at least
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partly for its own sake, and not only for the subsequent return of
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benefit that could be expected from doing so. Although they do not
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explicitly tie solidarity to the overcoming of domination and
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exploitation, Prainsack and Buyx do helpfully take note of the dangers
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for healthcare posed by commercial interests, as well as entrenched
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inequalities. This is evident, for example, in their account of the
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problems that afflict the use of large databases and biobanks, as well
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as the perils that attend some proposed uses of personalized medicine.
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But these problematic dimensions of contemporary life are treated more
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as background conditions rather than as structural and institutional
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features against which solidarity actions with others need to struggle.
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Moreover, we can observe that the prevalence of commercial interests in
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regard to health databases can undercut the very possibilities for
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solidarity that these authors seek, by deterring people from
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contributing their information to them from fear of such commercial use.
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This lends an additional practical motivation to taking these structural
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background conditions seriously, if solidarity is to be encouraged.
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Certainly, these authors are right to highlight forms of solidarity that
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may arise in pursuit of common aims or shared goals, as within a
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political community (often taken as national). But I would suggest that
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solidarity is also centrally a process aimed at overcoming forms of
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domination and structural injustice, where people share an interest in
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doing so. This struggle against domination can sometimes itself take an
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instrumental form. But when it involves normative solidarity, it is
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properly understood as motivated by a shared interest in justice rather
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than simply the pursuit of benefits. As I have suggested, the classic
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account of solidarity in this sense is that of labor movement
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solidarity, but similar notions have characterized a range of social
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movements, e.g., in Latin America and elsewhere, whether aimed at
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agrarian reform or at overcoming authoritarian rule, where they take the
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form also of democratic movements. I propose that these examples, with
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the processive and critical notion of solidarity they imply, have
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implications for an adequate conception of solidarity for healthcare and
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for its applications there. Before turning to this socially critical
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notion of solidarity, we can note a drawback in the standard reading
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that takes solidarity as a unitary notion within a single group or
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community like the nation-state. Insofar as the group is limited to
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compatriots, or to members of smaller pre-existing groups, it evidently
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does not address the needs or vulnerabilities of others situated outside
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these groups'' borders.
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Although there may be unitary groups or communities that are
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transnational, within which traditional forms of solidarity can be
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found, increasingly we see that cross-border or transnational
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relationships take a networked form and involve relations to
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`outsiders''. What sorts of solidarities are possible there both
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generally and in the context of healthcare? Some bioethicists have
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recently addressed this issue by introducing a notion of human
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solidarity or global solidarity. In the analysis given by Gunson, the
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notion of solidarity held to be suitable for global contexts and seen as
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underlying the Universal Declaration on Bioethics and Human Rights is
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explicitly understood as `weak solidarity,'' namely, `the willingness to
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take the perspective of others seriously.'' It does not add the
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requirement `to act in support of it,'' which he holds is characteristic
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of `strong solidarity,'' such as is involved in political solidarities or
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in social movements to counter exploitation or achieve justice. Gunson
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explicates weak solidarity as involving listening to others and `caring
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for others,'' but not necessarily as including efforts at reducing
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inequalities, or even a specific concern with those. He sees the
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Universal Declaration on Bioethics and Human Rights as appealing to a
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notion of human dignity, but seems to think that weak solidarity is
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sufficient to respect and uphold that dignity. I would suggest that the
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appropriate sense of dignity is the robust and demanding one that we
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find explicitly enunciated in the Universal Declaration of Human Rights,
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where dignity is taken in an egalitarian sense, and is held to imply
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certain labor rights, along with health itself as a human right. A
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related notion of dignity is likewise appealed to numerous times in the
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Universal Declaration on Bioethics and Human Rights, which also includes
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a specific reference to solidarity, as a goal of international
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cooperation, along with demands on governments for meeting health
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research and healthcare needs. But this Declaration could usefully go
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further to specify some of the practices that would help to realize
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these aims, and I suggest that strong, rather than weak, forms of
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solidarity would be required in order to fulfill them, and not merely
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the caring for and aiding others that Gunson and also Prainsack and Buyx
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emphasize in their accounts. We can distinguish two main senses of
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solidarity, as already adumbrated, each of which has import for
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healthcare and the structural injustice that may constrain it. One sense
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is unitary solidarity, often taken as pertaining to the relations among
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citizens within a state, but applying as well to the relations among
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members of smaller pre-existing groups. The second is what I call
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networking solidarity, evident when groups (often, though not
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necessarily, transnational), or sometimes also individuals, link up to
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work on projects aimed at overcoming oppression or exploitation. The
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first form of solidarity-unitary group solidarity-is often illustrated
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with the motto of the three musketeers: `One for all and all for one,''
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but that is a rather specific and highly demanding version of it.
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Nonetheless, it has the advantage of calling attention to solidarity as
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involving a clear awareness of a `we'' or `us''. Although some sense of a
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`we'' can be discerned in both forms of solidarity analyzed here, it
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applies to each type somewhat differently, as we shall see.
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In contrast, the individualist approach to solidarity advanced by
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Prainsack and Buyx tends to diminish the role of shared or collective
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activity, although it helpfully includes a notion of identification with
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an other who in their view are aided because they are regarded as
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`similar in some respect.'' In the account that I have developed, the
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first sense of solidarity pertains to relations among co-participants in
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an ongoing group, oriented to shared goals. Not all of the participants
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necessarily share all the goals of the group though they are generally
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committed to the main ones and to the group''s persistence and viability
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as a whole. Note that solidarity here may not always require a
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pre-existing shared identity or culture (although it often does), but
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may emerge from the constitution of an ongoing `we'' in the context of
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collective or group agency. The shared goals of the group are not
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aggregative, that is, a sum of each individual''s similar goals, but
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arise in common endeavors (normally including a multiplicity of
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overlapping subordinate goals), where the overarching goals are at least
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partly constitutive of the group itself. The various aims and goals are
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not always explicitly reflected on and are often embedded or
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institutionalized in the practices of the group. While such a conception
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of solidarity is often thought to be merely descriptive, I see it (as
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will be the case for the second sense as well) as grounded in a social
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ontology of what I have called individuals-in-relations, and as having
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normative dimensions. In this first case of group solidarity, as an
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instance of what I have elsewhere called `common activities,'' the norms
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go beyond the commitments involved in the constitution of any group
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whatever, and extend to the recognition (though often only implicit) of
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the fundamentally equal status of the individuals who constitute the
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group as agents. In virtue of this equality, I have argued elsewhere
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that the members should be granted equal rights to participate in
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processes of affirming and revising the goals of the group and should
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also have some say in how the various shared goals are carried out. This
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follows from an understanding of justice as what I have termed `equal
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positive freedom,'' or prima facie equal rights to the conditions of
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self-development, where such social contexts of activity are among these
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necessary conditions for individuals. In virtue of their equal agency,
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no individual has a right to dominate others in determining these common
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activities, that is, they have equal rights of co-determination of them.
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In this perspective, solidarity can be seen as an integral part of a set
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of norms that encompasses justice, as requiring the equal freedom of
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these relational individuals to develop themselves over time, and the
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norm of democracy, going beyond its traditional meanings of voting and
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majority rule to include equal rights of participation in co-determining
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group ends. In this account, which emphasizes people''s interdependence
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and their embodied nature, the sort of mutual support involved in group
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solidarity emerges as a crucial condition for the self-transformative
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activity of individuals and for the persistence of the group itself. We
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can say then that the requirement to realize justice along with a broad
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range of human rights through solidaristic activity arises from people''s
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interdependence and from the fact that their free development as agents
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requires a set of conditions, both material and social.
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Justice calls for the protection of the traditionally recognized
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negative liberties, but goes beyond it to require the availability of
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conditions that support people''s self-developing activity (both as
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individuals and as collectives) over time, that is, their positive
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freedom. Crucial among these conditions are health and healthcare, as
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|
well as education and other central social needs. Given the individuals''
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fundamental equality as agents, with both individual dignity and shared
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needs, the norm of justice as requiring action to realize equality not
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only qualifies any potential group solidarity, as it does on the
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|
Prainsack and Buyx account, but is properly a core aspect of solidarity
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|
itself as a normative practice. From this perspective, the solidarities
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that obtain within a group not only help to realize justice concretely,
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but also can be said to constitute `the other side of justice'' (in
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|
Habermas''s phrase). Solidarity actions not only reflect people''s
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pre-existing feelings of connection to each other, but also can function
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in practice to solidify their understanding of shared neediness and
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their interdependence in meeting these needs and pursuing shared goals.
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The interdependence involved in common endeavors like political
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communities, together with the equal vulnerability of members of such
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communities, involves forms of reciprocity and gives rise to the
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|
requirement of mutual aid that is characteristic of solidarity. Further,
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the conditions for the realization of both individual freedom and of the
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shared goals of the group can in fact be seen to require the absence of
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domination and exploitation, that is, the overcoming of these one-sided
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forms of recognition not only in interpersonal relations, but also as
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they are entrenched in structural or institutional forms. Included here
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|
are types of economic functioning that systematically disadvantage large
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groups of people, along with other forms of institutional discrimination
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on the basis of race or gender, or other minority characteristics.
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Although existing solidarity groups are not always fully aware of the
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relevance to them of overcoming such injustices, I believe that such
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demands of justice are in fact integral to solidarity as a norm and not
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external to it, as on the empirically oriented account advanced by
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Prainsack and Buyx. Moreover, we can see that ongoing (and not merely
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pre-given) solidaristic social action within a collectivity and
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community is needed as a way to more fully achieve justice within it.
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These interrelations between solidarity and justice are even more
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evident in the second sense of solidarity, which I have called
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networking solidarities. This second form is most often found in social
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movements. Conceptually it arises primarily from classic notions of
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labor solidarity, which I have suggested can be extended to these
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|
movements and can even characterize the relations that are increasingly
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evident among civil society associations, e.g., NGOs. Networking
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solidarity is a form particularly apt for capturing constructive
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|
relations of support toward distantly situated others, but it can also
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apply within, as well as across, borders. This form of solidarity is
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generally aimed at overcoming forms of domination and exploitation, but
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may also include networking to help alleviate suffering.
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As a relation among groups (or sometimes even among individuals), I have
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elsewhere argued that it manifests a type of social empathy or the
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understanding of another group''s situation and perspective, but such
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solidarity does not consist in sentiment per se. Rather, it necessarily
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involves action or a readiness to take action on behalf of, and in
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support of, others. Here, too, there is generally a commitment to a
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common cause, and when properly understood, I think, a commitment to
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justice. Although this form of solidarity in practice has tended to
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involve better-off people working to help those who are less advantaged,
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we can find a form of reciprocity implicit even here, in particular, an
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expectation of reciprocal action and mutual aid were it needed. More
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direct reciprocity is evident in traditional labor union solidarity, as
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|
well as in some social movements, where the solidarity actions are among
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people perceived to be similarly situated. In these various cases of
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networking solidarity, I have argued that normatively solidarity
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requires deference to the needs and goals of others as they themselves
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understand them. And ideally, solidarity movements should embody
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democratic modes of decision making among the participants, given their
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equal status as members, and their shared commitment to the overarching
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goals of their movement. Although there are some fully shared goals that
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motivate these forms of networking solidarity, especially inasmuch as
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they often take a project-oriented form, different subgroups act to
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realize these goals in ways they themselves determine, and they liaise
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or link up with each other to decide how each group can best participate
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and contribute. As groups or associations of their own, they tend to
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|
have their own sets of goals and plans unrelated to these solidarity
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|
actions. But they take themselves to be part of the larger movement or
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|
set of associations, aimed at overcoming forms of domination or
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|
suffering. Moreover, they often make use of online forms of networking
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|
and social media to coordinate their efforts with each other, and they
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|
offer each other mutual support and encouragement. Although the groups
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or individuals linking up in these networks can in some sense be
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regarded as themselves constituting a superordinate group, and thus from
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an abstract perspective as not being essentially different from the
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first form of group solidarity, the latter is unitary and understood by
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the members as a single group, most often pre-existing, while the former
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|
involves loose relations among groups (or sometimes also individuals)
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undertaken for the purpose of a given project or aim. In practice, then,
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we can regard these two forms of solidarity as distinct, and see them as
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|
manifested in two different types of social phenomena. The `we'' in the
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|
case of networking solidarity is constructed serially and diversely by
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|
its member groups (or individuals), and is oriented to a particular
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|
cause. Nonetheless, insofar as they take overcoming domination,
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|
oppression, or exploitation as their aim, they are at least partly
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defined by an egalitarian commitment to justice, and the `we'' should
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|
remain open to others similarly committed. It must be granted that labor
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|
solidarity and most social movement solidarity have often involved
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|
shared interests and an antagonistic relation to others regarded as
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|
exploitative or authoritarian. Indeed, the first sense of solidarity, as
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|
group solidarity, admits of a similar antagonistic relation to
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|
|
outsiders, e.g., in the case of hostility toward other nation-states.
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|
Nonetheless, we can see how normatively each of these forms of
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|
solidarity has the potential to develop in ways that are more inclusive
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|
rather than exclusive. In the national case this is possible if borders
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|
are not understood to reflect unitary shared identities but come to be
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|
|
regarded as contingent and indeed as porous, or at least much more so
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|
|
than at present. Likewise, labor and social movement solidarity are in
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|
|
principle open to all those who wish to join in their efforts to work
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|
toward social (and indeed global) justice, even though it must be
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|
admitted that in practice those benefiting from exploitation are
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|
|
unlikely to join in. The connection of solidarity to social and global
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|
justice suggests the need to theorize more fully how structural or
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|
|
systemic forms of injustice set the frame and motivation for many
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|
|
solidarity movements and can serve to orient their practices. The notion
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|
of structural injustice is perhaps most relevant to networking
|
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|
solidarities, especially where they explicitly aim at establishing
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|
|
justice and therefore would have to address such institutional forms of
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|
|
injustice. But this notion can also apply to unitary solidarity groups,
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|
|
if they seek to adequately meet the basic needs and respect the human
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|
|
rights of their members, who are affected by these forms of injustice.
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|
That structures or systems may operate so as to consistently produce
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|
injustices has been a prime insight in Marxist theories, which highlight
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|
the way the capitalist economic system exploits workers, apart from the
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|
|
specific intentions of individuals, who often do not aim at such
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|
exploitation. While classical liberal theories tend to put great weight
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|
|
on individual action and intention, the Marxist emphasis on structure
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|
and on the functioning of the capitalist system focuses us on the
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|
|
underlying ways in which corporations operate in accordance with the
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|
|
requirement to increase profits by way of the exploitation of labor.
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|
Marxist theory also brings to the forefront the notion of
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|
|
objectification. This refers to the significance of the embodiment of
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|
|
intentions and plans in artifacts and on the need to be recognized by
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|
|
others if people are to understand themselves. That is, it introduces
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|
|
elements of externality required for self-transformation, whether
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|
|
individual or cultural. In such an approach, not only the social, but
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|
|
the material, environment for human action can in various ways reflect
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|
|
existing class and other salient group differences. This environment for
|
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|
action also generates steady expectations and encourages certain modes
|
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|
|
of comportment in people who tend to operate in accordance with
|
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|
|
prevailing social practices and rules. At the same time, people have the
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|
|
capacity to change these practices and rules over time, though often
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|
|
only through collective choices and action. (This point may not always
|
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|
|
be duly appreciated in theories of structural injustice themselves.)
|
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|
|
More contemporary analyses of the structural factors that contribute to
|
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|
|
injustice, as found for example in the work of Anthony Giddens and Iris
|
|
|
|
Young, cast light on how individuals can reproduce problematic practices
|
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|
|
through their choices within these structural constraints. While Giddens
|
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|
|
focused on processes of what he called structuration, Young highlighted
|
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|
|
consumer choices and other social practices that serve to produce and
|
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|
|
reproduce injustices, in a certain sense unwittingly, for example, by
|
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|
|
impacting sweatshop workers at a distance or by limiting access to the
|
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|
|
existing housing stock.
|
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|
According to Young:Structural injustices are harms that come to people
|
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|
|
as a result of structural processes in which many people participate.
|
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|
These participants may well be aware that their actions contribute to
|
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|
|
the processes that produce the outcomes, but for many it is not possible
|
|
|
|
to trace the specific causal relation between their particular actions
|
|
|
|
and some particular part of the outcome. This emphasis on structure,
|
|
|
|
Young argues, turns our attention to `how the institutions of a society
|
|
|
|
work together to produce outcomes that support or minimize the threat of
|
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|
|
domination,'' where these outcomes largely depend on the social
|
|
|
|
positioning that conditions people''s diverse life prospects. In later
|
|
|
|
work, Young''s emphasis turns more to the ways that practices that
|
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|
|
connect people to each other implicate them in these processes of social
|
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|
|
and structural reproduction. On her view, the connections in which
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|
|
people stand give rise to what she calls a `forward looking'' sense of
|
|
|
|
political responsibility, and evoke the need to stand in solidarity with
|
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|
|
others. Leaving aside the difficult issue of responsibility, we can
|
|
|
|
observe that focusing primarily on the amorphous practices of social
|
|
|
|
life can lead us away from understanding the workings of contemporary
|
|
|
|
political economy and its detrimental effects on those who lack the
|
|
|
|
power to take any part in determining its direction. I have also
|
|
|
|
criticized a view that would simply characterize everyone-whether
|
|
|
|
workers or top executives-as implicated in these processes and
|
|
|
|
practices, seeing these groups as distinguished only by degree. Rather,
|
|
|
|
some have substantial control over the processes to which others are
|
|
|
|
subjected. But for the purpose of the analysis here, we can take
|
|
|
|
structural or systemic injustice to refer both to the operation of the
|
|
|
|
formal political-economic institutions of capitalism (along with racism
|
|
|
|
and patriarchy), and to the more informal practices and rules of social
|
|
|
|
life, which also contribute to the production and reproduction of
|
|
|
|
inequalities. How, then, are these structures and the injustices they
|
|
|
|
produce connected to solidarity, as analyzed here? Without attempting a
|
|
|
|
thorough account, we can observe that capitalist economic institutions
|
|
|
|
have in fact disrupted earlier forms of solidarity, such as those
|
|
|
|
characteristic of pre-capitalist political economies, marked by what
|
|
|
|
Durkheim called mechanical solidarity. At the same time, new forms of
|
|
|
|
solidarity have been created, e.g., through the division of labor (as
|
|
|
|
described in Durkheim''s term organic solidarity). In political contexts
|
|
|
|
as well, older solidarities within local communities have tended to give
|
|
|
|
way to national, or even transnational, forms. Yet, of greater relevance
|
|
|
|
for us here are the ways in which political economic institutions, with
|
|
|
|
the inequalities and forms of domination and exploitation they may
|
|
|
|
generate, frame and motivate new solidarity movements to address these
|
|
|
|
injustices. Recognizing how institutions and practices function in ways
|
|
|
|
that assign differential power to various groups in society is essential
|
|
|
|
if justice is to be constructed through solidaristic action. Even where
|
|
|
|
solidarity actions aim only at relieving suffering and do not directly
|
|
|
|
attempt to eliminate oppression or explanation, some understanding of
|
|
|
|
the social and institutional context of those to be aided is needed if
|
|
|
|
the solidarity actions are to be effective.
|
|
|
|
For example, efforts to address the aftermath of hurricanes and also to
|
|
|
|
mitigate them going forward call for attention to the social conditions
|
|
|
|
that lead impoverished or minority groups to be disproportionately
|
|
|
|
affected by such natural events-by reason of where they live, or the
|
|
|
|
ways they lack protection against excessive damage from these natural
|
|
|
|
events. In such situations, empathy with the situation of others, and
|
|
|
|
even specific action to assist them, however important they may be, are
|
|
|
|
insufficient unless they are coupled with an understanding of the
|
|
|
|
impacts of the structural features of political economy and the
|
|
|
|
injustices to which the operations of these institutions give rise. This
|
|
|
|
is even more evidently the case where solidarity movements aim directly
|
|
|
|
at overcoming oppression and exploitation, e.g., ending sweatshop labor.
|
|
|
|
In such cases, effective action must not only support workers
|
|
|
|
individually or remedy their specific situation but requires a socially
|
|
|
|
critical analysis of the prevailing context that gives rise to the
|
|
|
|
exploitation in the first place, which may also provide indications of
|
|
|
|
how to address it. We can grant that solidaristic practices, whether in
|
|
|
|
healthcare or other contexts, may well have their own utility as an
|
|
|
|
expression of our sociality and our enjoyment of acting in common, and
|
|
|
|
in this sense solidarity can even be said to have some value apart from
|
|
|
|
its functioning to help in constructing justice. But the argument here
|
|
|
|
is that these practices can be truly effective in meeting their aims
|
|
|
|
only if they go well beyond charity and also beyond practices that
|
|
|
|
simply `incur costs to assist others recognized as similar'' (in the
|
|
|
|
Prainsack/Buyx formulation). If they are to conduce toward justice,
|
|
|
|
these solidarity practices and movements need to address the ways that
|
|
|
|
social, economic, and political institutions systematically function to
|
|
|
|
deny some groups of people the basic means of life, and give rise to
|
|
|
|
pervasive inequalities in people''s opportunities for self-development
|
|
|
|
and for participating in processes of collective self-determination.
|
|
|
|
This is the case most clearly for what I have called networking
|
|
|
|
solidarities, but it can apply to solidarity within more unitary
|
|
|
|
contexts like nation-states to the degree that the bonds involved (e.g.,
|
|
|
|
among citizens) are not merely pre-existing but affirmed and reinvented
|
|
|
|
over time. Even more demandingly, at a normative level, we can say that
|
|
|
|
solidaristic action needs to take seriously the requirement for deep
|
|
|
|
social transformation in the direction of social, and indeed global,
|
|
|
|
justice. In this way, as I have argued elsewhere, although solidarity
|
|
|
|
remains particularistic in its orientation to specific problems and
|
|
|
|
specific groups or individuals, it can keep in view the demands of
|
|
|
|
universal human dignity. And solidarity movements can verify that their
|
|
|
|
particular goals contribute (in however limited a way) to the broader
|
|
|
|
goal of egalitarian social transformation. Thus, dispositions to
|
|
|
|
empathy, deference, and mutual aid remain important components of
|
|
|
|
solidaristic social action, but a critical analysis of the social
|
|
|
|
context and concretely taking action oriented to alleviating structural
|
|
|
|
injustices are needed as well. In addition, since the institutional
|
|
|
|
context, with its given power relations, frames the various solidarity
|
|
|
|
movements, sometimes the prevailing power formations are replicated
|
|
|
|
within these movements themselves.
|
|
|
|
I suggest that this calls for groups and agents to be self-reflective
|
|
|
|
about these effects of the structural context in which they function,
|
|
|
|
and to be on guard about the dangers of their own possible complicity in
|
|
|
|
its replication and perpetuation. An important proviso should be
|
|
|
|
mentioned before returning to the case of healthcare and considering the
|
|
|
|
impact of the notions of solidarity analyzed here. That is, although
|
|
|
|
solidarity has here been related to justice, with the concomitant need
|
|
|
|
to analyze and address the structural injustices that frame solidarity
|
|
|
|
action, there is no implication that solidarity movements or other
|
|
|
|
solidarity activities are sufficient for achieving the institutional
|
|
|
|
changes that justice requires. For that, democratic legislation and
|
|
|
|
various political and economic transformations are also needed. But
|
|
|
|
solidarity, whether binding the members of a nation-state, or
|
|
|
|
interpreted in newer networking forms, are one important way of
|
|
|
|
constructing the conditions for these transformations, or even, in some
|
|
|
|
cases of prefiguring more just relations within the social relations of
|
|
|
|
solidarity themselves. There is no question that the new focus on
|
|
|
|
solidarity holds considerable import for healthcare, as Prainsack and
|
|
|
|
Buyx have effectively argued. But the issue for us is what further
|
|
|
|
benefit would result from incorporating solidarity''s connection to
|
|
|
|
justice, holding in view the significance of countering structural or
|
|
|
|
systemic injustices. Given the vast range and specifics of healthcare
|
|
|
|
and the social and economic factors conducive to health, I will focus on
|
|
|
|
only a few of the most obvious implications for the practice of
|
|
|
|
healthcare and for the potentially solidaristic activities of
|
|
|
|
practitioners. We can ask: what difference would it make if we take
|
|
|
|
seriously the need to address the differential structural power of the
|
|
|
|
individuals and groups involved in healthcare, whether as practitioners
|
|
|
|
or those served by them? And what is the scope and nature of the
|
|
|
|
solidarity thus required? I will suggest in this final section that
|
|
|
|
understanding solidarity in relation to structural injustice can not
|
|
|
|
only shed new light on the sorts of examples that Prainsack and Buyx
|
|
|
|
consider, but also, more importantly perhaps, highlight an entirely
|
|
|
|
different range of examples of healthcare solidarity from the ones those
|
|
|
|
authors consider. It takes us beyond such cases as the readiness to
|
|
|
|
assist others through participating in healthcare databases or biobanks
|
|
|
|
to cases of active participation in social movements aimed at improving
|
|
|
|
healthcare nationally or transnationally, or, more defensively, to
|
|
|
|
protesting structural injustices that lead to the wrongful denial of
|
|
|
|
healthcare or to deep inequalities in its allocation. An obvious case of
|
|
|
|
structural injustice in healthcare is provided by the deficiencies
|
|
|
|
evident in the U.S. health insurance system (or lack of a system).
|
|
|
|
Europeans have long recognized the centrality of solidarity with fellow
|
|
|
|
citizens needed to undergird a willingness to contribute through taxes
|
|
|
|
to a universal healthcare system. The types of provision in fact vary
|
|
|
|
considerably, from socialized medicine as in the UK to state-funded
|
|
|
|
support for private insurance provision, as in the Netherlands, along
|
|
|
|
with dual systems mixing public and private support. But the
|
|
|
|
universality at which these systems aim reflects the recognition of
|
|
|
|
people''s shared vulnerabilities in matters of health, and even an
|
|
|
|
understanding that healthcare is a human right required by justice.
|
|
|
|
There is also the acknowledgement that systematic or structural
|
|
|
|
provision (or at least a guarantee) of healthcare is required in order
|
|
|
|
to realize the universality at stake here. It is perhaps worth
|
|
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mentioning that despite their achievements, structural injustices do
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nonetheless persist in many of the European systems themselves. This is
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|
particularly the case where there are two tiers of provision such that
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|
private insurance is needed in order to gain superior care that (ideally
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|
at least) should be available to all. (Granted that in some European
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|
countries the public providers may actually be superior to private ones
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|
in some respects.) The lack of universal healthcare in the United States
|
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|
|
is evidently primarily due to the existence of structural injustice,
|
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|
|
rather than simply reflecting an absence of solidarity among
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|
compatriots. To state the obvious: the U.S. private insurance
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|
industry-and especially its leading large for-profit companies-is
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|
immensely powerful and, currently at least, enormously profitable. As
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|
part of the dominion of capitalist economic forms, these private firms
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|
also have inordinate influence over politics, as do the large drug
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|
companies. The activities of these companies exemplify the role of the
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`power of money'' that is widely prevalent in U.S. politics and society,
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|
which in turn circumscribes the possibilities for public policy and law.
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|
Corporate lobbying and campaign contributions from corporations and the
|
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|
wealthy notably undercut political equality in the United States and can
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|
also prevent attention to the basic tasks involved in meeting human
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|
needs in equitable ways. Beyond this, it can be argued that the
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systematic differences between people''s starting positions, depending on
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|
their class and race, in large measure fall out of existing economic
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|
functioning, particularly given the resistance of the powerful to the
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|
redistributions that would be needed for genuinely equal opportunities.
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|
Moreover, these differential and deleterious starting positions conduce
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|
to worse health outcomes for children affected by them, and for many
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|
adults over the course of their lives. In view of this systemic
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injustice, the sort of solidarity needed, then, is not only an empathic
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|
identification with other citizens (or better, with all members of the
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|
political community, including non-citizens). Rather, for meaningful
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|
change, attention also needs to be paid to the structural barriers to
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equal and universal healthcare. Although improvements and reforms can
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probably be made even without fundamental changes in these background
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|
structural economic and political conditions, realizing the goal of
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genuinely equal treatment would require transforming those basic
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economic structures themselves. And this in turn calls for social
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movements aimed at these transformations. In the case of the United
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States, some healthcare workers in fact have taken the lead in
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solidarity actions to preserve the existing limited forms of health
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|
insurance against efforts to strip vulnerable people of their coverage
|
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|
altogether. This represents an example of a type of solidarity action in
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|
the service of justice. Needless to say, much more needs to be done to
|
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|
develop a fully critical solidarity movement of the sort required.
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|
Indeed, some healthcare worker groups-notably National Nurses United and
|
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|
Physicians for Universal Healthcare-have taken the lead in spearheading
|
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|
the movement for Medicare for All, going considerably beyond the efforts
|
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|
to prevent repeal of the Affordable Care Act.
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|
They originally argued for a public option when that healthcare law was
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under development, and have gone on to organize healthcare consumers in
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various locales across the United States, including rural areas and
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|
those with large industries, to press for systemic changes in health
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|
insurance and in healthcare delivery, such as through establishing
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|
|
non-profit community health centers. In both domestic contexts and more
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|
global ones, connecting solidarity to structural injustice has been
|
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|
|
important for understanding and addressing the social and economic
|
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|
|
factors that greatly magnify the health impacts of natural disasters,
|
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|
e.g., of hurricanes or tsunamis or volcanic eruptions. Whereas
|
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solidarity with affected people has most often been episodic and
|
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|
|
motivated by empathy with them, attention to the structural factors that
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|
exacerbate the impact of these disasters on vulnerable populations
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|
expands the scope of what needs to be done in a forward-looking
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|
|
justice-oriented perspective. As suggested earlier, structural
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|
injustices that lead impoverished people to live in weak dwellings or in
|
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|
insecure geographical areas also expose them differentially to the
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|
health and other effects of weather or environmental catastrophes.
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|
Beyond the specific catastrophes, we can see that climate change itself
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|
has greater impacts on those groups as well, effects that will only
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|
increase over time. Cases that illustrate the ways that structural
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|
injustices intensify natural disasters (if not also contributing to
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|
causing them) are manifold, and the solidarity movements that have
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|
responded to these disasters are instructive for our purposes. A well
|
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|
known case is Hurricane Katrina in New Orleans in 2005, where African
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|
Americans made up 80\% of the people in flooded low-lying communities,
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|
sometimes residing in inadequate housing like trailers, and without the
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|
means to escape the rising waters (especially due to low rates of car
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|
ownership). Not only did these minority communities bear the large part
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|
of the deaths and injuries from the hurricane, but also they experienced
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|
|
abiding health problems, e.g., those due to mold. Yet, despite the
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|
|
grossly inadequate federal response to this disaster, residents offered
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|
each other mutual assistance and were also aided by solidarity groups
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|
like Common Ground, which helped with community rebuilding, including
|
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|
|
founding a free health clinic, and aiding with wetlands restoration. A
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|
|
related example is the response to Hurricane Sandy in the New York/New
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|
Jersey area, where healthcare workers set up free clinics in trucks, and
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|
helped to raise money for much needed medical supplies for the various
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|
communities that lacked adequate resources of their own to deal with the
|
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|
|
storm aftermath. Internationally, structural injustices significantly
|
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|
|
contributed to the grave impact of the 2010 Haiti Earthquake, in which
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|
over 200,000 people were killed and over 300,000 injured, with more than
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|
1.5 million rendered homeless. Before the quake, many Haitians were
|
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|
|
impoverished and lived in slum conditions, leaving them highly
|
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|
|
vulnerable to floods and other natural disasters. The International
|
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|
|
Monetary Fund had implemented austerity programs in the preceding
|
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|
|
decades, which contributed to an evisceration of the public health
|
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|
|
systems and in turn to the health crisis following the earthquake, where
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|
|
there were radically insufficient medical supplies available.
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|
In the period that preceded the quake, an estimated 75\% of Haiti''s
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|
healthcare services had been provided by multinational and faith-based
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|
non-governmental organizations (NGOs), and its entire health supply
|
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|
|
system was externally run. The aid following the quake likewise involved
|
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|
|
a massive influx of international non-governmental organizations
|
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|
|
(INGOs), but Haitian NGOs were marginalized, as were the Haitian
|
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|
|
authorities, and over 90\% of the aid money went to international
|
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|
|
actors, including the UN and INGOs, and to the private sector. This aid,
|
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|
|
too, was unequally distributed between the capital and rural areas, and
|
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|
|
between well-off and less well-off areas of Port-au-Prince itself. In
|
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|
|
contrast, more adequately addressing the medical needs arising from the
|
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|
|
quake, some international healthcare NGOs succeeded in working in
|
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|
|
solidarity with local Haitians, in particular, the INGO Partners in
|
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|
|
Health, which explicitly incorporated a focus on the impacts of
|
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|
|
structural factors in their efforts. A more recent case is provided by
|
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|
|
Hurricane Maria, which devastated Puerto Rico in the summer of 2017.
|
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|
|
This natural disaster likewise calls attention to political economic and
|
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|
|
social structural factors that greatly aggravated the situation. Years
|
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|
|
of austerity, this time managed by the U.S. government and banks, along
|
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|
|
with massive debt, left hospitals without many doctors and with
|
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|
|
inadequate medical supplies needed to deal with injuries following the
|
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|
|
storm. Puerto Rico''s defective electrical grid also hampered the
|
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|
|
recovery from the hurricane. The inadequacies of this grid were
|
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|
|
exacerbated by the freeze imposed on a public infrastructure fund, which
|
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|
|
was instead used to funnel support to public-private partnerships under
|
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|
|
the same restructuring program. Moreover, in Puerto Rico, as in Haiti,
|
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|
|
we observe inequalities in the response to affected communities in the
|
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|
|
capital vs. in poorer rural areas. Solidarity work by healthcare
|
|
|
|
workers, including doctors from Cuba, along with aid from the Puerto
|
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|
|
Rican diaspora, has been important in recovery and rebuilding efforts,
|
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|
|
but has not been able to make up for the lack of support from the U.S.
|
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|
|
government. It is evident, then, that effective action requires
|
|
|
|
understanding the economic and social factors that condition people''s
|
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|
|
life chances and their health, including the limitations imposed by
|
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|
|
their places of residence. Indeed, the economic functioning of
|
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|
|
capitalism seems to be a major causal factor not only in these discrete
|
|
|
|
natural events but also in climate change itself. While no single
|
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|
|
solidarity movement can counter these structural or systemic effects,
|
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|
|
establishing a linkage between a particular event and the deeper
|
|
|
|
structural conditions for its differential impact on impoverished or
|
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|
|
vulnerable populations is important for adequate public policy going
|
|
|
|
forward, and for the provision of the right forms of assistance in the
|
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|
|
present. It suggests the need for aid that not only restores the
|
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|
|
situation to the one that preceded the environmental event in question
|
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|
|
but that establishes a better, and more resilient, situation going
|
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|
|
forward. Clearly, an interlinking and networking of solidarity movements
|
|
|
|
and of civil society organizations, as well as of public policy, would
|
|
|
|
be necessary for the social transformative changes required.
|
|
|
|
Similar arguments concerning the need for solidarity activity to remedy
|
|
|
|
structural injustices can be advanced in regard to other central
|
|
|
|
national or global health problems: for example, the provision of clean
|
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|
|
water, as in the case of Flint, Michigan, or the protection of the water
|
|
|
|
supplies from fracking, or from underwater pipelines as in the case of
|
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|
|
Standing Rock, where there was a substantial solidarity struggle in
|
|
|
|
support of the affected Sioux indigenous people in 2016-2017.
|
|
|
|
Internationally, the health challenges include the need for wider and
|
|
|
|
cheaper provision of drugs to counter HIV-AIDS along with a host of
|
|
|
|
other illnesses; ways of dealing with malaria and with preventable
|
|
|
|
epidemics; providing clean water worldwide; and addressing the range of
|
|
|
|
health issues that result from trafficking, child labor, and slave
|
|
|
|
labor. In all these cases, solidarity movements would need to join up
|
|
|
|
with others working to counter exploitation and the dominion of the
|
|
|
|
profit motive, or struggling to rectify the deep inequalities in social
|
|
|
|
and economic conditions, along with the effects of absolute poverty.
|
|
|
|
Likewise, in regard to the overarching problem of climate change itself,
|
|
|
|
we have already seen the emergence of major transnational solidarity
|
|
|
|
movements, often taking the form of networks of local groups, and
|
|
|
|
including the participation of numerous healthcare workers. Examples are
|
|
|
|
the older Via Campesina, the People''s Climate Movement, and 350.org,
|
|
|
|
among many others. In the international context, mention should also be
|
|
|
|
made of the way structural injustice frames medical problems arising
|
|
|
|
from illness and other natural causes, but also those arising from war
|
|
|
|
and other forms of violence. Some solidarity movements in those contexts
|
|
|
|
have focused on offering aid to the injured, as with the `White Helmets''
|
|
|
|
operating in rebel-held areas of Syria, extracting the living from the
|
|
|
|
rubble following Syrian government bombings. While this group is
|
|
|
|
composed mainly of volunteers and is anti-authoritarian, it otherwise
|
|
|
|
eschews any specific political affiliation. The Kurdish YPG (People''s
|
|
|
|
Defense Units) in northern Syria, which also has healthcare units
|
|
|
|
operating in areas under attack, presents a somewhat different case,
|
|
|
|
since it is explicitly anti-capitalist in orientation. However, a full
|
|
|
|
discussion of these complex cases would take us beyond the scope of the
|
|
|
|
present discussion. We can, in conclusion, return to two of the cases
|
|
|
|
analyzed by Prainsack and Buyx and attempt to view them through the lens
|
|
|
|
of structural injustice, with the resulting transformed interpretation
|
|
|
|
of the solidaristic action required in those bioethical contexts. While
|
|
|
|
less dramatic than the leading examples analyzed above, where solidarity
|
|
|
|
needs to be directed explicitly towards countering structural
|
|
|
|
injustices, the Prainsack and Buyx cases pose some interesting issues
|
|
|
|
for consideration. The two applications of solidarity are those of
|
|
|
|
governing health databases (as they put it), and personalized medicine
|
|
|
|
and healthcare. As we have noted, in the course of their acute analysis,
|
|
|
|
Prainsack and Buyx occasionally point to the dangers of the commercial
|
|
|
|
uses of medical databases. But we can ask whether their recognition of
|
|
|
|
these dangers fully informs their own account. Perhaps because they wish
|
|
|
|
to make proposals that can be adopted immediately, the authors employ
|
|
|
|
the notion of solidarity to recommend only modest restrictions on the
|
|
|
|
use of these databases.
|
|
|
|
For example, they urge that their use contribute to some public good at
|
|
|
|
the same time as they retain their commercial or profit-oriented
|
|
|
|
purposes, where these latter can even remain primary. The authors also
|
|
|
|
tend to accept the existing limits on public funding for research as a
|
|
|
|
given, rather than strongly arguing for its expansion by way of
|
|
|
|
solidarity actions, however difficult accomplishing this might be in the
|
|
|
|
present. In fact, the use of health databases for the purpose of private
|
|
|
|
profit is a social choice that a society need not endorse. Likewise, the
|
|
|
|
scope and extent of public funding is also a matter of policy and
|
|
|
|
legislation, even if alternative directions would be difficult to
|
|
|
|
implement in the context of a capitalist political economy. It is
|
|
|
|
constraints posed by the latter that I would highlight in an alternative
|
|
|
|
structural perspective on solidarity, taking us beyond the commitment to
|
|
|
|
assist others that these authors foreground in their analysis. Indeed,
|
|
|
|
one can further argue that the solidarity that Prainsack and Buyx seek,
|
|
|
|
as a willingness to share one''s own data in large databases, can
|
|
|
|
actually be undercut by structural injustices. This is evident
|
|
|
|
especially in regard to the potential commercial use of the data.
|
|
|
|
Informed people, aware of the dangers that this background structural
|
|
|
|
feature poses, may well be resistant to taking a chance on acting in the
|
|
|
|
solidaristic ways that these authors recommend. People may be wary of
|
|
|
|
these commercial uses and indeed, may even come to expect them, so they
|
|
|
|
would decide against contributing their own information, despite
|
|
|
|
assurances of confidentiality. In this way, the existing tendency toward
|
|
|
|
an overriding concern with private self-interest is reinforced by the
|
|
|
|
very existence and continuation of these structural background
|
|
|
|
conditions. In this context, efforts to eliminate structural injustice,
|
|
|
|
if effective, could be expected to assist in promoting the sorts of
|
|
|
|
solidarities that Prainsack and Buyx seek. Another specific difference I
|
|
|
|
have with these authors'' otherwise excellent account of databases and
|
|
|
|
their governance has to do with their rather puzzling remarks about
|
|
|
|
dealing with the risks that must be accepted by those who contribute
|
|
|
|
their health data to the database. For Prainsack and Buyx, solidarity is
|
|
|
|
supposed to motivate people to provide their own health data to these
|
|
|
|
databases and they argue that only `broad consent'' is needed for the use
|
|
|
|
of this data by researchers rather than more traditional forms of
|
|
|
|
informed consent, which they regard as excessively demanding and costly
|
|
|
|
in this context. The authors propose that less attention should be given
|
|
|
|
to preventing the risks of re-identification (with the potential
|
|
|
|
discrimination that might follow) and more attention given to mitigating
|
|
|
|
or compensating for harms that may accrue to individuals from misuse of
|
|
|
|
their data in the future. This includes, they suggest, making fewer
|
|
|
|
efforts to assure individual consent in a strong sense, and instead
|
|
|
|
placing more emphasis on putting funds aside to remedy harms or injuries
|
|
|
|
arising from misidentification or, more generally, from the misuse of
|
|
|
|
information. I believe that encouraging solidaristic actions and
|
|
|
|
practices of the sort these authors seek to engender would instead be
|
|
|
|
aided by focusing even more than is presently done on preventing and
|
|
|
|
limiting the risks that inevitably attend contributing one''s personal
|
|
|
|
health data for use in medical databases.
|
|
|
|
This is so not only for instrumental reasons, namely, because otherwise
|
|
|
|
people will not participate out of (largely rational) fear of these
|
|
|
|
untoward consequences. A greater emphasis on limiting risk is also
|
|
|
|
essential in recognition of the real structural problems that frame
|
|
|
|
these databases, namely, the great commercial potential they hold and
|
|
|
|
their openness to corporate use of the included health information in
|
|
|
|
the interests of profits, along with the deep challenges involved in
|
|
|
|
safeguarding privacy online. These structural features would not be
|
|
|
|
meliorated by the authors'' otherwise fine proposals to allow
|
|
|
|
contributors to access their own raw data, and to be informed of
|
|
|
|
possible health impacts on them personally that emerge from the research
|
|
|
|
the databases facilitate. To adequately deal with the various social,
|
|
|
|
technological, and medical challenges posed by these large databanks
|
|
|
|
requires solidarity action in the interest of structural change besides
|
|
|
|
the reforms the authors have sketched. Further, although Prainsack and
|
|
|
|
Buyx helpfully suggest in passing that a few patients should be included
|
|
|
|
among those who serve on the proposed governance boards for large
|
|
|
|
databanks, it seems that the majority on these boards would be made up
|
|
|
|
of standing groups of people whose only requirement is not to have
|
|
|
|
conflicts of interest in regard to the potential uses of the databanks.
|
|
|
|
This delimitation seems insufficient to assure the responsibility owed
|
|
|
|
to the contributors of data, particularly in view of the background
|
|
|
|
functioning of social and economic institutions that give managers and
|
|
|
|
other elites the preponderance of power. Inasmuch as ethics boards are
|
|
|
|
also ruled out by the authors as trustees (because they are
|
|
|
|
overburdened, in their view, or may not be knowledgeable about the
|
|
|
|
specific research in question), it is unclear how these governance
|
|
|
|
boards would best be constituted on their approach. A strongly
|
|
|
|
solidaristic view would require that a substantial number should be
|
|
|
|
drawn from patients or their representatives, though it would clearly
|
|
|
|
also be important to include a sizable number of scientists and other
|
|
|
|
experts. We can see then that quasi-democratic requirements emerge for
|
|
|
|
the governance of these databanks, such that those affected by them
|
|
|
|
would have some say in overseeing them. This follows as well from the
|
|
|
|
feature of deference, which I suggested is an important aspect of an
|
|
|
|
adequate conception of solidarity. Deference is required toward those
|
|
|
|
one is assisting, who should have a major role in specifying their needs
|
|
|
|
and how they want to be assisted. Efforts must thus be made to hear from
|
|
|
|
them systematically. This involves new forms of democratic, or perhaps
|
|
|
|
quasi-democratic, input into the policies or actions in question. I use
|
|
|
|
the qualification `quasi'' here to indicate that the input in question
|
|
|
|
may not always have to be formal, though there is certainly a place for
|
|
|
|
formal rights of participation on governance boards by some
|
|
|
|
representatives of patients or even the public at large. This sort of
|
|
|
|
deference to patients and democratic input by them also casts light on
|
|
|
|
the final example of solidarity in action, drawing again from the
|
|
|
|
Prainsack and Buyx account. They analyze the case of `personalized
|
|
|
|
medicine'' or `precision medicine,'' which most often refers to the use of
|
|
|
|
analytical software and databases to target medicine and healthcare to
|
|
|
|
individuals in ways that are unique to them, e.g., by the use of
|
|
|
|
genomics and through such software systems as IBM''s Watson.
|
|
|
|
The authors rightly point out that group characteristics continue to be
|
|
|
|
important to these analyses, since data about groups provide the
|
|
|
|
parameters for evaluating the medical status of individuals. But in
|
|
|
|
personalized or precision medicine, the focus comes to be on the
|
|
|
|
intersection of these group findings within particular differentiated
|
|
|
|
individuals. Moreover, the authors usefully propose to extend the
|
|
|
|
characteristics that are taken into account in personalized practices to
|
|
|
|
include also social ones, as well as individuals'' cultural and personal
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preferences. In regard to the identification of group characteristics
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and their embodiment in unique ways in individuals, it is clearly
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important to adopt a socially critical perspective as to what
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constitutes a relevant group. That is, taking structure into account
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suggests the importance of becoming aware of social preconceptions and
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potential bias in the identification of a group. This holds not only for
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standard ascriptive group identifications along the lines of gender,
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race, etc., but also of newer sets of subgroups or emerging crosscutting
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groups. It would also affect the ways both researchers and clinicians
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identify the social background conditions and the social and cultural
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preferences of the individuals, if these are to be taken into account
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and added to personalized medicine and healthcare, as Prainsack and Buyx
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propose. We can delineate one final implication of the importance of
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participation in healthcare by those affected, which I have suggested
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follows from a conception of solidarity that includes deference and
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hearing from others as to how they want to be aided or assisted.
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Clearly, a fuller view of personalized medicine would not only look at
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evidence-based therapies targeted at individuals drawing from large
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databases of relevant research, but should be open to input from
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patients themselves about the aims and methods of therapy. Even the
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basic interpretation of health and wellness, both of which are clearly
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shared goals of patients and clinicians, can be open to patients'' input.
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This sort of participation by those affected by the practice of medicine
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and healthcare need not be understood in a way that diminishes the role
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of science or expertise. Rather, it reflects the recognition that
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solidarity with patients requires openness to their own perspectives and
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goals, and ideally involves their participation in co-determining their
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own care. Given the range of research knowledge and existing therapies,
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a truly personalized medicine would not only home in on targeted precise
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therapies, but would involve an interactive and cooperative process of
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health building and health sustenance. As argued here, it would also
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require practices of attunement to, and solidarity with, a patient''s
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social context, needs, and aspirations. Further, understanding that
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social context, in turn, requires a focus on the differential power and
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inequalities that result from prevailing political and economic
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institutions, that is, an attention to structural injustice. The author
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declares no conflict of interest. Carol C. Gould is Distinguished
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Professor in Philosophy at Hunter College and in the Doctoral Programs
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in Philosophy and Political Science at the Graduate Center of The City
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University of New York, where she is also Director of the Center for
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Global Ethics and Politics. She is Editor of the Journal of Social
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Philosophy. Her most recent book is Interactive democracy: The social
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roots of global justice (Cambridge University Press, 2014.) Prainsack,
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B., \& Buyx, A. (2017).
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Solidarity in biomedicine and beyond.
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Cambridge: Cambridge University Press. See for example, Gunson, D.
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(2009). Solidarity and the universal declaration on bioethics and human
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rights. Journal of Medicine and Philosophy, 34, 241-260. I discuss this
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question in Gould, C. C. (2014). Interactive democracy: The social roots
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of global justice. Cambridge: Cambridge University Press. Prainsack \&
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Buyx, op. cit. note 1; and Prainsack, B., \& Buyx, A. (2011).
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Solidarity: Reflections on an emerging concept in bioethics. Retrieved
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February 25, 2018, from
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https://nuffieldbioethics.org/wp-content/uploads/2014/07/Solidarity\_rep
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ort\_FINAL.pdf Prainsack \& Buyx, op. cit. note 1, p. 52. Ibid., pp. 68,
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77, 93. Ibid., pp. 76, 77, 93. Gould, C. C. (2007). Transnational
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solidarities. Journal of Social Philosophy, 38(1) (Special Issue on
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Solidarity, C. Gould \& S. Scholz), 146-162; Gould, op. cit. note 3, pp.
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99-131. Bayertz, K. (1999). Four uses of `solidarity''. In K. Bayertz
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(Ed.), Solidarity (pp. 3-28). Dordrecht: Kluwer. More recent
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articulations of the Catholic notion of solidarity, in particular, have
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seen it as tied labor, e.g., in the Polish Solidarnosc movement or to
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Latin American social movements. See for example, Beyer, G. J. (2014).
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The meaning of solidarity in Catholic social teaching. Political
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Theology, 15(1), 7-25. Clearly, too, as Beyer points out, Christianity
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is not unique among religions in appealing to some conception of
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solidarity. See also Schoenfeld, E. \& Mestrovic, S. G. (1989).
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Durkheim''s concept of justice and its relationship to social solidarity.
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Sociology of Religion, 50(2), 111-127. For a discussion of the some of
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the meanings of solidarity in historical context, see Brunkhorst, H.
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(2005). Solidarity: From civic friendship to a global legal community.
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Cambridge, MA: MIT Press; Pensky, M. (2008). The ends of solidarity:
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Discourse theory in ethics and politics. Albany, NY: State University of
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New York Press. For a discussion of the distinction of solidarity from
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charity and from humanitarian aid, see Gould, op.cit. note 8. Gould, C.
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C. (1983). Beyond causality in the social sciences: Reciprocity as a
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model of non-exploitative social relations. In R. S. Cohen \& M. W.
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Wartofsky (Eds.), Epistemology, methodology and the social sciences:
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Boston studies in the philosophy of science (Vol. 71, pp. 53-88).
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Boston: D. Reidel; Gould, C. C. (1988). Rethinking democracy: Freedom
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and social cooperation in politics, economy, and society (pp. 31-90).
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Cambridge: Cambridge University Press. Gould, op. cit. note 8. Note that
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Andrea Sangiovanni adds this sort of national solidarity as a third
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traditional root of the notion, in addition to those derived from the
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Christian and socialist traditions. See Sangiovanni, A. (2015).
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Solidarity as joint action. Journal of Applied Philosophy, 32, 340-359.
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Eckenwiler, L., Straehle, C., \& Chung, R. (2012). Global solidarity,
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migration, and global health inequity. Bioethics, 26, 382-390. Gunson,
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op. cit. note 2, p. 247. Ibid. For an intensive discussion of the
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concept of political solidarity and its forms, see Scholz, S. J. (2008).
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Political solidarity. University Park: Penn State University Press.
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Gunson, op. cit. note 2, p. 248. Gould, C. C. (1978). Marx''s social
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ontology: Individuality and community in Marx''s theory of social
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reality. Cambridge, MA: MIT Press; Gould (1988), op. cit. note 13, pp.
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91-132. For a development of the implications of this social ontology
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for understanding human rights and solidarity, see Gould, op. cit. note
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3.
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See especially Gould (1988), op. cit. note 13, pp. 31-90 and Gould, op.
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cit. note 3. Ibid. Ibid. For a related argument, see Young, I. M.
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(1990). Justice and the politics of difference. Princeton, NJ: Princeton
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University Press; Young, I. M. (2000). Inclusion and democracy. Oxford:
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Oxford University Press. On interdependence and vulnerability, see Held,
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V. (2006). The ethics of care: Personal, political, and global. New
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York, NY: Oxford University Press. For a discussion of the material and
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social conditions for human agency, including healthcare, see Gould, C.
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C. (2004). Globalizing democracy and human rights. Cambridge: Cambridge
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University Press. Regarding the connection of these conditions to
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economic and social human rights, see also Gould (1988), op. cit. note
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13, pp. 190-214, and Gould, op. cit. note 3, pp. 13-57. My own treatment
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of the notion of negative and positive freedom was indebted especially
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to Macpherson, C. B. (1973). Democratic theory: Essays in retrieval.
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Oxford: Oxford University Press. See Gould, op. cit. note 13, pp. 18-20,
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38-40, where I also discuss some differences from his view. Gould
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(1988), op. cit. note 13. Habermas, J. (1990). Justice and solidarity:
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On the discussion concerning Stage 6. Tr. S. W. Nicholson. In T. E. Wren
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(Ed.), The moral domain: Essays in the ongoing discussion between
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philosophy and the social sciences (pp. 244-245). Cambridge, MA: MIT
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Press. Gould (2004), op. cit. note 24; Gould, op. cit. note 8. Gould,
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op. cit. note 8. See also the account of solidarity and justice in
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Ferguson, A. (2009). Iris Young, global responsibility, and solidarity.
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In A. Ferguson \& M. Nagel (Eds.), Dancing with Iris: Between
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phenomenology and the body politic in the political philosophy of Iris
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Marion Young (pp. 185-197). New York, NY: Oxford University Press.
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Gould, ibid: 157; Gould, op. cit. note 3, p. 111. Rippe, K. P. (1998).
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Diminishing solidarity. Ethical Theory and Moral Practice, 1(3),
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355-373. I have discussed inclusiveness and democracy in social
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movements in Gould, op. cit. note 3, pp. 99-131. Giddens, A. (1984). The
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constitution of society. Cambridge: Polity Press. Young, I. M. (2003).
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Political responsibility and structural injustice. Lawrence: University
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of Kansas, p. 7. Ibid, p. 6. Young, I. M. (2006). Responsibility and
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global justice: A social connections model. Social Philosophy and
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Policy, 23(1), 102-130. I discuss Young''s conception of responsibility
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for global justice in Gould, C. C. (2009). Varieties of global
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responsibility: Reflections on Iris Marion Young''s last writings. In
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Ferguson \& Nagel, op. cit. note 29, pp. 199-211. Ibid. Although the
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focus in this article is primarily on the injustice and exploitation
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|
resulting from capitalist structures, it is evident that political
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economic institutions serve to replicate racism and patriarchy in
|
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addition to economic exploitation. A fuller account would need to
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|
consider the interrelations among these various forms of systemic or
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structural injustice, and the ways they produce unequal access to
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healthcare, along with deeply problematic impacts on health and
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|
well-being. Durkheim, E. (1964). The division of labor in society. Tr.
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G. Simpson. New York, NY: The Free Press. For further discussion, see
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Gould, op. cit. note 3, chapter 6. For a discussion of a range of
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environmental injustices and movements to address them, see Bullard, R.
|
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D. (Ed.). (2005). The quest for environmental justice: Human rights and
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|
the politics of pollution. San Francisco, CA: Sierra Club Books.
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For a useful discussion of the interaction of natural and social factors
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|
in Katrina and other U.S. disasters, see Tierney, K. (2006). Social
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|
inequality, hazards, and disasters. In R. J. Daniels, D. F. Kettl, \& H.
|
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Kunreuther (Eds.), On risk and disaster: Lessons from Hurricane Katrina
|
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(pp. 109-128). Philadelphia: University of Pennsylvania Press. See also
|
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the helpful analyses in Bullard R. D. \& Wright, B. (Eds.). (2009).
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Race, place, and environmental justice after Hurricane Katrina:
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Struggles to reclaim, rebuild and revitalize New Orleans and the Gulf
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Coast. Boulder, CO: Westview Press. Disasters Emergency Committee. Haiti
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earthquake facts and figures. UK. Retrieved February 24, 2018, from
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https://www.dec.org.uk/articles/haiti-earthquake-facts-and-figures The
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Haiti Case Study. (2012). NATO-Harvard Working Paper. Retrieved February
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24, 2018, from
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https://www.jallc.nato.int/products/docs/haiti\_case\_study.pdf Luge, T.
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(2010). Haiti case study. Retrieved February 24, 2018, from
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https://www.slideshare.net/Timoluege/2010-haiti-earthquake-response-case
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-study Chen, M. (2017, June 8). The bankers behind Puerto Rico''s debt
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crisis. The Nation. New York, NY. Retrieved February 23, 2018, from
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https://www.thenation.com/article/bankers-behind-puerto-ricos-debt-crisi
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s/ Prainsack \& Buyx, op. cit. note 1, p. 104. Ibid., pp. 114, 115.
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Ibid., p. 115. Ibid., p. 119. INTRODUCTION CURRENT INTERPRETATIONS OF
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SOLIDARITY IN HEALTHCARE TWO SENSES OF SOLIDARITY AND THEIR RELATION TO
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JUSTICE STRUCTURAL INJUSTICE AND SOLIDARITY SOME IMPLICATIONS FOR
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HEALTHCARE CONFLICT OF INTEREST Footnotes The concept of solidarity has
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recently come to prominence in the healthcare literature, addressing the
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motivation for taking seriously the shared vulnerabilities and medical
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|
needs of compatriots and for acting to help them meet these needs. In a
|
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recent book, Prainsack and Buyx take solidarity as a commitment to bear
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|
costs to assist others regarded as similar, with implications for
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governing health databases, personalized medicine, and organ donation.
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|
More broadly, solidarity has been understood normatively to call for
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`standing with'' or assisting fellow community members and possibly also
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distant others in regard to their needs, whether for its own sake or in
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|
order to realize the demands of justice. I argue here that the
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understanding of solidarity in the existing bioethics literature is
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|
unduly restricted by not sufficiently theorizing the notion of
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|
structural (or systemic) injustice and its import for understanding
|
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|
solidarity. Extending traditional conceptions of labor and social
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|
movement solidarity, I contrast unitary solidarity within a given group
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|
with `networking solidarities'' across groups. I analyze the meaning of
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structural injustice and its significance for solidarity, including
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|
countering institutionally entrenched inequalities and economic
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|
exploitation. I then apply this broadened conception to healthcare,
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|
discussing structural problems with the U.S. insurance system and the
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|
solidarity movements addressing its deficiencies. I analyze some natural
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|
disasters and global health challenges that were aggravated by
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|
structural injustices, along with the solidarity movements they
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|
engendered. Finally, I revisit the questions of governing health
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databases and of personalized medicine with the enlarged conception of
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solidarity in view.'
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affiliation: 'Gould, CC (Corresponding Author), 333 Cent Pk West,Apt 16, New York,
|
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NY 10025 USA.
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|
Gould, Carol C., CUNY, Hunter Coll, Dept Philosophy, New York, NY 10021 USA.
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Gould, Carol C., CUNY, Grad Ctr, Doctoral Program Philosophy, New York, NY 10021
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USA.
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Gould, Carol C., CUNY, Grad Ctr, Doctoral Program Polit Sci, New York, NY 10021
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USA.'
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author: Gould, Carol C.
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|
author-email: carolcgould@gmail.com
|
|
author_list:
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|
- family: Gould
|
|
given: Carol C.
|
|
da: '2023-09-28'
|
|
doi: 10.1111/bioe.12474
|
|
eissn: 1467-8519
|
|
files: []
|
|
issn: 0269-9702
|
|
journal: BIOETHICS
|
|
keywords: healthcare; justice; solidarity
|
|
keywords-plus: JUSTICE
|
|
language: English
|
|
month: NOV
|
|
number: 9, SI
|
|
number-of-cited-references: '35'
|
|
pages: 541-552
|
|
papis_id: aa07d1e90a6ed209308d451f69f825e9
|
|
ref: Gould2018solidarityproblem
|
|
researcherid-numbers: 'Baldissera, Annalisa/AHD-6334-2022
|
|
|
|
Fazli, Ghazal/AAE-8320-2022'
|
|
times-cited: '34'
|
|
title: Solidarity and the problem of structural injustice in healthcare
|
|
type: article
|
|
unique-id: WOS:000450332600002
|
|
usage-count-last-180-days: '85'
|
|
usage-count-since-2013: '1528'
|
|
volume: '32'
|
|
web-of-science-categories: Ethics; Medical Ethics; Social Issues; Social Sciences,
|
|
Biomedical
|
|
year: '2018'
|