TY - JOUR
AU1 - Mark, Flear,
AB - The editors of the Cambridge Bioethics and Law series have made yet another worthy addition to their cutting-edge series. This groundbreaking book provides a significant and convincing challenge to the individualistic focus of the legal and regulatory frameworks that apply to biomedicine and other fields. Within biomedicine in particular, the focus on the individual is typically found in the centrality of autonomy expressed as consent.1 In contrast, this book sets out the conceptual and practical fundamentals for an approach based on solidarity, and gives them further substantiation through concrete case studies. The book’s research agenda thus has two interlinked and mutually supportive parts: the first theoretical and conceptual, and the second practical. This agenda has obvious resonance with, and derives a large part of its timeliness and significance from, the increasing discussion of solidarity—global, national and with those most affected, such as refugees—as a prescription to ameliorate and even cure global economic crises, climate change, environmental disasters, and armed conflict. These have otherwise proven intractable. Prainsack and Buyx identify the relentless focus on the individual as the root of these crises, and the problems attendant to the current legal and regulatory framing of key issues in biomedicine. Throughout this book they argue that this framing causes distortions in regulatory attention, with the consequence that societal and individual benefit can be marginalised and stymied by and within the existing regulatory frameworks applicable to biomedicine (and other fields). The ideas within this book emerged from Prainsack and Buyx’s involvement in the work of the Nuffield Council on Bioethics, the UK’s de facto bioethics authority.2 In the Foreword the Council’s Director, Hugh Whittall, provides rich and useful background to the origins of this book and its agenda, and this is elaborated further in Chapter 1.3 The book thus derives from, and never loses sight of, the importance of practical application to pressing issues of individual and societal concern, especially in the field of biomedicine. It is in relation to the practical application of solidarity in legal and regulatory frameworks, including through their adjustment, that Prainsack and Buyx seek to elaborate and give specific meaning to the concept of solidarity. Indeed, when referenced and deployed in legal and regulatory frameworks, concepts (including solidarity) ‘need to be specific and firm enough … to serve as points of reference to justify or explain actions’ (pp 1–2). The accountability and legitimacy of legal and regulatory action that might make reference to solidarity, is thus a central concern. The justification of action by formally accountable actors underscores the wider salience of solidarity, and thus is a further contribution of this book. The frameworks, and their constitutive concepts such as solidarity, are of use to the production and legitimation of sociopolitical orders and projects of rule at imbricating levels: global, regional, supranational, national, and subnational. The initial focus of the book is on theorising and developing solidarity as the conceptual basis for legal and regulatory frameworks. This is undertaken across Part I, which comprises Chapters 2–4. The discussion here clarifies the concept of solidarity as a regulatory and public concept, and distinguishes it from related terms such as love and friendship that describe personal and private relations. Chapter 2 provides a rich and hugely informative overview of the intellectual background and important themes in scholarly discussions of solidarity.4 It overviews some key departure points in early sociological work on solidarity, such as the classic works of Weber and Durkheim (pp 19–22), before turning to recent and contemporary social thought to sketch the patchy theorisation, take-up and deployment of solidarity in the Euro-Atlantic region (where greater reference to solidarity is made in Continental Europe). The picture that emerges is of a concept that warrants more concerted engagement, particularly for the purposes of embedding solidarity within legal and regulatory frameworks. A number of key insights are sketched to provide reference points for the definition of solidarity, which is then set out in the next chapter (pp 24–41). For instance, communitarianism contributes insights on the self and the relationship between the individual and community (pp 24–29). The latter relationship is extended through a postmodern understanding of subjectivity as (inter)relational that refuses the dominance of the understanding of individuals as autonomous (pp 30–33). The idea of the ethics of care—‘of how we enable good individual choices towards including how we achieve a good way of living together by caring for each other’ (p 31)—is used to further underpin the understanding of interpersonal relations. The ethics of care is combined with insights from elsewhere in order to recognise difference while also pointing to suffering in common as a foundation for fellow feeling and solidarity. Due to the dominance of the rational, self-interested actor in public and political debates, some space is given to the rather limited discussion of solidarity amongst scholars in the rational choice tradition (pp 33–34). What becomes especially clear is the restricted understanding of solidarity within this scholarship—that solidarity emerges when individuals benefit—and, as a consequence, its limited influence within this book. Instead, the sociological work noted above informs the book to a far greater extent. A related body of literature that informs Prainsack and Buyx and their understanding of solidarity, is that which explores the interplay between ‘political, economic and social “background conditions” that enable and foster solidarity on the one hand, and concrete expressions of solidarity at the level of social practice on the other’ (p 35), particularly as found in the welfare state arrangements of European societies. Understanding the nature of this interplay is central to determining the appropriate role of solidarity in shaping legal and regulatory frameworks for biomedicine and other fields. Against this background, Prainsack and Buyx set out their definition of solidarity in Chapter 35—‘enacted commitments to accept costs to assist others with whom a person or persons recognise similarity in a relevant respect’ (p 43). The importance of practice within specific contexts is pinpointed as one particularly important feature of this definition (pp 44–48), and is elaborated further, before turning to the conceptualisation of personhood as relational (pp 48–52). Prainsack and Buyx never lose sight of the importance of the practical application of solidarity. It is with that in mind that the discussion specifies three tiers of solidarity, wherein solidaristic practices are gradually scaled up and solidified. The first tier is interpersonal enactment (p 54), the second is focused on solidarity within groups (pp 55–56), and the third tier takes solidarity to the societal level (pp 56–57). At this level, solidarity is crystallised in contractual, legal, or administrative norms that further reflect and enforce practices in society at large. The rest of Chapter 3 tackles some of the criticisms of Prainsack and Buyx’s previous work on solidarity, and in this light it tries to foresee and tackle criticisms of the concept of solidarity set out in this book. This is helpful to furthering debates on solidarity as a regulatory concept. The discussion of Dawson and Verweij’s criticisms is instructive in this regard. For instance, they claim that in Prainsack and Buyx’s earlier work it is unclear whether their concept of solidarity is intended to contribute towards debates on ‘what is right and wrong in public health and health care practices’6 (p 63). In response, Prainsack and Buyz clarify that their understanding of solidarity is ‘largely descriptive’, but that this ‘understanding of what the analytical and political value of solidarity is and can be’ (p 63) has important normative dimensions. Specifically, ‘policies reflecting people’s willingness to accept costs to help others are preferable to policies that do not accommodate or consider solidarity’ (p 63), and the prioritisation of solidarity in policy and practices ‘lead[s] to happier people and more flourishing communities’ (p 64). Chapter 4 fills out the normative dimensions of solidarity further.7 The concept of solidarity built by Prainsack and Buyx is ‘descriptive-normative … grounded in the axiological sphere. Depending on the level of institutionalisation [that is, the further towards tier three] some enactments move towards the deontic’ (p 93). In their understanding, solidarity is not akin to concepts such as human rights or justice, in that it is not an ideal theory (concerned with what ought to be done—in the deontic sphere of normativity). Instead, their specific understanding of solidarity is of one that is grounded and comes into being through ‘actual practical conditions and empirical evidence for practices and behaviours’ (p 93). Furthermore, their version of solidarity is not a ‘theoretical ideal of how people should act’ and, unlike purely theoretical accounts, it does have regard to ‘how, and why, they actually do act’—in the axiological sphere of normativity (p 93, emphasis in original). With the theoretical basis for solidarity traced and given substance and significant authority and weight, in Part II Prainsack and Buyx discuss solidarity in practice and advance the second part of their research agenda. Three case studies are provided to help substantiate the claim that solidarity can and should become a key reference point for the (re)design of legal and regulatory frameworks. These comprise health databases, personalised medicine and healthcare, and organ donation, and are discussed in Chapters 5–7.8 Each of these case studies are at the cutting edge of intense debates within medical law and ethics and regulation studies. To take the discussion of organ donation in Chapter 7 as an example, instead of making sweeping statements and deeming the applicable legal and regulatory approaches ripe for reframing as solidaristic, Prainsack and Buyx take care to examine three of the main concrete practices and policies. The first example is live organ donation between strangers (interpersonal or first-tier solidarity), the second is the priority allocation of organs to members of a club of registered donors (group-based or second-tier solidarity), and the final example is the introduction of an opt-out (or presumed) consent system of post-mortem organ donation to replace an opt-in consent system (through legal norms that generate and represent societal level or third-tier solidarity). An indication of the discussion can be provided by reference to the latter. Prainsack and Buyx explain how experience and views from ‘on the ground’ are key to understanding the preference for opt-out systems. In jurisdictions that adopt these systems, support for organ donation and transplantation tends to be strong and there are stable majorities willing to donate their organs after death. This is evidenced in Eurobarometer surveys9 (p 163), and the vote in favour of introducing an opt-out system in Wales that led to legislation in 2013, in force since 2015.10 Nevertheless, the number of people who actually register as potential organ donors tends to be lower than those who are willing to donate if asked (see discussion at pp 162–63 and in particular the Eurobarometer surveys). But how might the concept of solidarity offer a solution? Prainsack and Buyx suggest that the gap between individual motivations and practice underscores the extent to which extant policy is not only ‘faulty … [but] also harms the opportunity to implement solidarity within society’ (p 164). What is needed in order to implement solidarity through a switch from an opt-in to an opt-out system, they persuasively argue, is a clear indication that people’s motivations to donate ‘meet the criteria of solidarity’ (p 164, emphasis added); that is, similarity in a relevant respect and a willingness to accept ‘costs’ to help others. So, for example, people must also be ‘truly aware of consent being presumed in their country’ (p 154). The motives of the population for donating also need to be consistent with solidarity, and those with personal, religious or other reasons not to donate could be respected through registration of dissent following public education of the shift to an opt-out system. Furthermore, an opt-out system requires public information, education, and participation and trust in state organisations, in order to meet the criteria of solidarity. The motivation for an individual practice and the context within which it is implemented, are both necessary in order to amount to an enactment of solidarity (third-tier solidarity). A similar sensitivity to the social embeddedness of solidarity through practices is found throughout the examples in Part II of the book. In relation to the value of solidarity to legal and regulatory frameworks (third-tier solidarity), a key message from Chapter 4 comes through even more clearly within the discussion in Part II: in democratic societies, solidaristic laws and regulations, in order to become durable, need to be based on actual practices that people engage in voluntarily and not merely to avoid social or legal repercussions. When there are no actual axiological practices to support these norms, such laws and regulations would amount to little more than “deontic shells”. (p 80) Overall, the three case studies do what Prainsack and Buyx say in that each ‘add[s] [a] new perspective to longstanding and complex bioethical debates and … help to develop innovative policy solutions’ (p 9). The analysis in each of these three chapters combines to make a convincing case for the efficacy of solidarity and the legitimacy of a turn to it, through its embedding in and use as a key reference point in legal and regulatory frameworks. The book’s conclusion, in Chapter 8, distils the ideas set out across the book into a series of insights, and provides prescriptions for the resolution of some of the most pressing issues in legal and regulatory theory and practice.11 Prainsack and Buyx also discuss some of the main limits of their contribution, including the way in which solidarity engenders processes of ‘othering’. However, they counter that the exclusionary implications of solidarity can be ameliorated through the very conditions they see as integral to their concept of solidarity: ‘trustworthy institutions, political stability and where people have reasonable safety nets in case something goes wrong’ (p 182). Prainsack and Buyx discuss another limitation of their concept, that it is dependent on the recognition of similarity in some respect. They wisely observe that reference to ‘solidarity’ cannot in and of itself (en)force feelings and recognition of similarity in some respect (that is, solidarity). Thus, in these circumstances it might be preferable to refer to other concepts, such as those of justice and fairness. However, in making this point the example of European Union (EU) level action in relation to refugees could have usefully been discussed in more detail, because although EU level action is couched in terms of solidarity, it is at least in part solidarity between EU Member States that is referenced in the official documentary record, rather than solidarity with refugees.12 While this example does not detract from the point being made, it could have been developed to reinforce the dangers of ‘othering’ and exclusion that arise from the quite different (essentially self-interested) understanding of solidarity that is referred to within the EU’s legal and regulatory order, at least as it pertains to refugees.13 This could, in turn, help to further underscore the importance of the development and dissemination of the concept of solidarity set forth in this book. This book is likely to propel ongoing discussion and fruitful developments in regulatory frameworks for years to come. It does so by offering solidarity as the basis on which to (re)ground and (re)fashion legal and regulatory frameworks. The work undertaken throughout this book is thoughtful, rigorous, theoretically and conceptually informed, and always directed at charting a nuanced path towards practical application. All those interested in the (re)design of the legal and regulatory frameworks applying to biomedicine and wider fields will need to grapple with the timely, original, and valuable ideas set forth in this book. Footnotes 1 See eg SAM McLean, Autonomy, Consent and the Law (Routledge 2009); A Maclean, Autonomy, Informed Consent and Medical Law: A Relational Challenge (CUP 2013); M Donnelly, Healthcare Decision-Making and the Law (CUP 2014). 2 Nuffield Council on Bioethics, Solidarity: Reflections on an Emerging Concept in Bioethics (Nuffield Council on Bioethics 2011). 3 ‘Solidarity: A Brief History of a Concept, and a Project’. 4 ‘Solidarity – Intellectual Background and Important Themes’. 5 ‘What is Solidarity?’. 6 A Dawson, M Verweij, ‘Solidarity: A Moral Concept in Need of Clarification’ (2012) 5 Public Health Ethics 1, 2. 7 ‘Solidarity – Normative Approaches’. 8 ‘Solidarity in Practice I: Governing Health Databases’; ‘Solidarity in Practice II: Personalised Medicine and Health Care’; ‘Solidarity and Organ Donation’, chs 5–7, respectively. 9 European Commission, Special Eurobarometer 333: Organ Donation and Transplantation; Blood Donation and Blood Transfusions (2009) <http://ec.europa.eu/commfrontoffice/publicopinion/archives/eb_special_339_320_en.htm#333> accessed on 22 January 2018. 10 Human Transplantation (Wales) Act 2013. 11 ‘Solidarity with Whom? Conclusions and Ways Forward’. 12 See further, European Commission, Communication on the Delivery of the European Agenda on Migration, COM(2017) 558 final. 13 Although not necessarily in areas that are more directly related to the regulatory terrain covered in this book, see further, TK Hervey and JV McHale, European Union Health Law: Themes and Implications (CUP 2015). © The Author(s) 2018. Published by Oxford University Press; All rights reserved. For Permissions, please email: journals.permissions@oup.com This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/open_access/funder_policies/chorus/standard_publication_model)
TI - Barbara Prainsack and Alena Buyx, Solidarity in Biomedicine and Beyond
JF - Medical Law Review
DO - 10.1093/medlaw/fwy007
DA - 2018-11-01
UR - https://www.deepdyve.com/lp/oxford-university-press/barbara-prainsack-and-alena-buyx-solidarity-in-biomedicine-and-beyond-IX0HuoJJqU
SP - 708
VL - 26
IS - 4
DP - DeepDyve
ER -