Journals

Smoke Free? Public Health Policy, Coercive Paternalism, and the Ethics of Long‐Game Regulation

Journal of Law and Society - Fri, 2020-01-24 17:12
Abstract

Contemporary public health advocacy promotes a ‘fifth wave of public health’: a ‘cultural’ shift wherein the public's health becomes recognized as a common good, to be realized through concerted developments in the institutional, social, and physical environments. With reference to examples from anti‐tobacco policy, in this article I critically examine the fifth‐wave agenda in England. I explore it as an approach that, in the face of liberal individualism, works through a ‘long‐game’ method of progressive social change. Given the political context, and a predominant concern with narrow understandings of legal coercion, I explain how efforts are made to apply what are presented as less ethically contentious framings of regulatory methods, such as are provided by ‘libertarian paternalism’ (‘nudge theory’). I argue that these fail as measures of legitimacy for long‐game regulation: the philosophical foundations of public health laws require a greater – and more obviously contestable, but also more ambitious – critical depth.

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The Legal and Social Construction of Value in Government Procurement Markets

Journal of Law and Society - Fri, 2020-01-24 17:11
Abstract

The Public Services (Social Value) Act 2012 introduces a social value duty. It requires public authorities in England and Wales that are carrying out procurement activities to ‘consider’ how such activities might ‘improve … economic, social and environmental well‐being’. This article analyses qualitative, empirical data on how the social value duty has been interpreted and applied across local government in England. Although only a weak legal duty, this law has made a notable impact on practice. The article explains the changes brought about in practice under the social value duty and seeks to understand why these changes have occurred. It does so by recognizing local government procurement markets, as well as local government organizations themselves, as strategic action fields. In these fields, there are competing visions for social value. It is through conversations between actors that a common meaning comes to be attached to the law.

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Democratic Group Cognition

Philosophy & Public Affairs - Tue, 2020-01-21 18:19
Philosophy &Public Affairs, EarlyView.
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Democratic Group Cognition

Philosophy & Public Affairs - Tue, 2020-01-21 18:19
Philosophy &Public Affairs, EarlyView.
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The Romantic Allure of Old Europe: Pertinent Questions and Non‐Responses

The Modern Law Review - Sun, 2020-01-19 18:59
The Modern Law Review, EarlyView.
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When Vanity Is Dangerous

Philosophy & Public Affairs - Sun, 2020-01-19 17:39
Philosophy &Public Affairs, EarlyView.
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When Vanity Is Dangerous

Philosophy & Public Affairs - Sun, 2020-01-19 17:39
Philosophy &Public Affairs, EarlyView.
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Jurisdiction in Trans Health

Journal of Law and Society - Sun, 2020-01-19 16:18
Abstract

This article utilizes a novel framework to analyse the contested boundaries between law and medicine. Bringing theoretical and empirical insights together, it expands recent socio‐legal scholarship on jurisdiction. Jurisdictional analysis is conducted in an under‐researched area of health law – namely, the accessibility of trans‐related health care. The article draws upon the first qualitative research project to assess the impact of self‐declaration of legal gender status in Denmark. This was adopted in 2014, at the same time as access to hormones and surgeries was centralized and restricted. The combined impact of these reforms disappointed the trans people interviewed, which demonstrates the importance of identifying how legal and medical norms interrelate. Jurisdictional analysis helps to illuminate how law was used to develop and protect professional competencies. Such insights will be valuable for researchers interested in the potential of self‐declaration, and for scholars of health law and socio‐legal studies more generally.

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Pharmaceutical Ethics and Grassroots Activism in the United States: A Social History Perspective

Journal of Bioethical Enquiry - Thu, 2020-01-16 22:00
AbstractWomen ’s health activists laid the groundwork for passage of the law that created the U.S. Food and Drug Administration in 1906. The pharmaceutical and food industries fought regulatory reforms then and continue to do so now. We examine public health activism in the Progressive Era, the postwar era and the present day. The women’s health movement began in the 1960s, and criticized both the pharmaceutical industry and the medical establishment. In the 1990s, patient advocacy groups began accepting industry funds; thousands of commercially-funded groups now dominate the advocacy landscape. As phar ma funding became normalized, concerns arose regarding a) the lack of transparency and public accountability regarding funding, b) the distortion of groups’ agendas, and c) the abilit...
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The concise argument

Journal of Medical Ethics - Tue, 2020-01-14 14:35

This post-holiday edition of the JME brings together a number of papers, covering a range of methodologies, surveys on public opinion, the application of developmental neuroscience, comparative risk/benefit questionnaires, scoping reviews and analysis of guidance and health policy, alongside what might be seen as more traditional medical ethics, analysing concepts and advancing arguments. This range of methodologies is suggestive of the kind of discipline that bioethics has become, and how a wealth of disciplinary and methodological perspectives is needed to address the numerous challenges that face modern health systems.

The Editors’ Choice article by Derbyshire and Brockman1 considers the contentious issue of fetal pain, and applies developmental neuroscience to the question of at what stage, if at all, a fetus can feel pain? The authors argue that new evidence suggests we cannot rule out that foetuses might experience pain before 24 weeks. The authors define pain as...

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Reconsidering fetal pain

Journal of Medical Ethics - Tue, 2020-01-14 14:35

Fetal pain has long been a contentious issue, in large part because fetal pain is often cited as a reason to restrict access to termination of pregnancy or abortion. We have divergent views regarding the morality of abortion, but have come together to address the evidence for fetal pain. Most reports on the possibility of fetal pain have focused on developmental neuroscience. Reports often suggest that the cortex and intact thalamocortical tracts are necessary for pain experience. Given that the cortex only becomes functional and the tracts only develop after 24 weeks, many reports rule out fetal pain until the final trimester. Here, more recent evidence calling into question the necessity of the cortex for pain and demonstrating functional thalamic connectivity into the subplate is used to argue that the neuroscience cannot definitively rule out fetal pain before 24 weeks. We consider the possibility that the mere experience of pain, without the capacity for self reflection, is morally significant. We believe that fetal pain does not have to be equivalent to a mature adult human experience to matter morally, and so fetal pain might be considered as part of a humane approach to abortion.

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Worth living or worth dying? The views of the general public about allowing disabled children to die

Journal of Medical Ethics - Tue, 2020-01-14 14:35
Background

Decisions about withdrawal of life support for infants have given rise to legal battles between physicians and parents creating intense media attention. It is unclear how we should evaluate when life is no longer worth living for an infant. Public attitudes towards treatment withdrawal and the role of parents in situations of disagreement have not previously been assessed.

Methods

An online survey was conducted with a sample of the UK public to assess public views about the benefit of life in hypothetical cases similar to real cases heard by the UK courts (eg, Charlie Gard, Alfie Evans). We then evaluated these public views in comparison with existing ethical frameworks for decision-making.

Results

One hundred and thirty participants completed the survey. The majority (94%) agreed that an infant’s life may have no benefit when well-being falls below a critical level. Decisions to withdraw treatment were positively associated with the importance of use of medical resources, the infant’s ability to have emotional relationships, and mental abilities. Up to 50% of participants in each case believed it was permissible to either continue or withdraw treatment.

Conclusion

Despite the controversy, our findings indicate that in the most severe cases, most people agree that life is not worth living for a profoundly disabled infant. Our survey found wide acceptance of at least the permissibility of withdrawal of treatment across a range of cases, though also a reluctance to overrule parents’ decisions. These findings may be useful when constructing guidelines for clinical practice.

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Is 'best interests the right standard in cases like that of Charlie Gard?

Journal of Medical Ethics - Tue, 2020-01-14 14:35

Savulescu and colleagues have provided interesting insights into how the UK public view the ‘best interests’ of children like Charlie Gard. But is best interests the right standard for evaluating these types of cases? In the USA, both clinical decisions and legal judgments tend to follow the ‘harm principle’, which holds that parental choices for their children should prevail unless their decisions subject the child to avoidable harm. The case of Charlie Gard, and others like it, show how the USA and the UK have strikingly different approaches for making decisions about the treatment of severely disabled children.

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Deciding when a life is not worth living: Animperative to measure what matters

Journal of Medical Ethics - Tue, 2020-01-14 14:35

As a neonatal neurologist, I serve families facing tragic decisions in which they must balance trade-offs between death and life with profound disability. I often find myself in complex discussions about future outcome, in which families sort through in real-time what information they value most in making such a choice. Will he laugh? Will he be in pain? Will he know how much he’s loved? In this month’s feature article, Brick et al share the results of an online survey aimed at assessing public views on when a life is not worth living, in an effort to inform ongoing legal and clinical debates about withdrawal of life-sustaining treatment for children. These findings raise important questions about how we define and measure outcomes that matter to parents as they make these tragic decisions.

It is challenging to interpret these findings in the absence of context of how decision-making for infants...

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Public views about quality of life and treatment withdrawal in infants: limitations and directions for future research

Journal of Medical Ethics - Tue, 2020-01-14 14:35

Work done within the realm of what is sometimes called ‘descriptive ethics’ brings two questions readily to mind: How can empirical findings, in general, inform normative debates? and How can these empirical findings, in particular, inform the normative debate at hand? Brick et al1 confront these questions in their novel investigation of public views about lives worth living and the permissibility of withdrawing life-sustaining treatment from critically ill infants. Mindful of the is-ought gap, the authors suggest modestly that their data ‘may be useful when constructing guidelines for clinical practice’. In this commentary, I consider some potential limitations on the generalisability of these data in the context of policy and clinical practice, limitations which may in turn serve as directions for future empirical research.

The authors’ study presented participants six case scenarios, five of which involved the possibility of withdrawing life-sustaining treatment from critically ill infants. The...

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Relationships help make life worth living

Journal of Medical Ethics - Tue, 2020-01-14 14:35

Decisions regarding life-sustaining medical treatments for young children with profound disabilities can be extremely challenging for families and clinicians. In this study, Brick and colleagues1 surveyed adult residents of the UK about their attitudes regarding withdrawal of treatment using a series of vignettes of infants with varying levels of intellectual and physical disability, based on real and hypothetical cases.1 This is an interesting study on an important topic. We first highlight the limitations of using these survey data to inform public policy and then offer a different interpretation from the authors’ regarding their findings about the value the public appears to place on relational capacity.

The authors asked members of the lay public to interpret a disabled child’s best interest in a series of vignettes. The respondents were 92% white; 59% were atheist or reported no religious affiliation. Though the authors note this lack of...

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The relational threshold: a life that is valued, or a life of value?

Journal of Medical Ethics - Tue, 2020-01-14 14:35

The four thoughtful commentaries on our feature article draw out interesting empirical and normative questions. The aim of our study was to examine the views of a sample of the general public about a set of cases of disputed treatment for severely impaired infants.1 We compared those views with legal determinations that treatment was or was not in the infants’ best interests, and with some published ethical frameworks for decisions. We deliberately did not draw explicit ethical conclusions from our survey findings, both because of the acknowledged limitations of survey methodology, and because survey conclusions cannot, in themselves, yield answers about what the right threshold should be for providing or withholding treatment.2

In this brief response, we are going to address head-on the important ethical question raised within our survey – when life is worth living for an infant. We follow-up on the suggestion of...

Categories: Journals

Revising ethical guidance for the evaluation of programmes and interventions not initiated by researchers

Journal of Medical Ethics - Tue, 2020-01-14 14:35

Public health and service delivery programmes, interventions and policies (collectively, ‘programmes’) are typically developed and implemented for the primary purpose of effecting change rather than generating knowledge. Nonetheless, evaluations of these programmes may produce valuable learning that helps determine effectiveness and costs as well as informing design and implementation of future programmes. Such studies might be termed ‘opportunistic evaluations’, since they are responsive to emergent opportunities rather than being studies of interventions that are initiated or designed by researchers. However, current ethical guidance and registration procedures make little allowance for scenarios where researchers have played no role in the development or implementation of a programme, but nevertheless plan to conduct a prospective evaluation. We explore the limitations of the guidance and procedures with respect to opportunistic evaluations, providing a number of examples. We propose that one key missing distinction in current guidance is moral responsibility: researchers can only be held accountable for those aspects of a study over which they have control. We argue that requiring researchers to justify an intervention, programme or policy that would occur regardless of their involvement prevents or hinders research in the public interest without providing any further protections to research participants. We recommend that trial consent and ethics procedures allow for a clear separation of responsibilities for the intervention and the evaluation.

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Ottawa Statement does not impede randomised evaluation of government health programmes

Journal of Medical Ethics - Tue, 2020-01-14 14:35

In this issue of JME, Watson et al call for research evaluation of government health programmes and identify ethical guidance, including the Ottawa Statement on the ethical design and conduct of cluster randomised trials, as a hindrance. While cluster randomised trials of health programmes as a whole should be evaluated by research ethics committees (RECs), Watson et al argue that the health programme per se is not within the researcher’s control or responsibility and, thus, is out of scope for ethics review. We argue that this view is wrong. The scope of research ethics review is not defined by researcher control or responsibility, but rather by the protection of research participants. And the randomised evaluation of health programmes impacts the liberty and welfare interests of participants insofar as they may be exposed to a harmful programme or denied access to a beneficial one. Further, Watson et al’s claim that ‘study programmes ... would occur whether or not there were any ... research activities’ is incorrect in the case of cluster randomised designs. In a cluster randomised trial, the government does not implement a programme as usual. Rather, researchers collaborate with the government to randomise clusters to intervention or control conditions in order to rigorously evaluate the programme. As a result, equipoise issues are triggered that must be addressed by the REC.

Categories: Journals

Randomised evaluation of government health programmes does present a challenge to standard research ethics frameworks

Journal of Medical Ethics - Tue, 2020-01-14 14:35

In a recent issue of Journal of Medical Ethics (JME), we discussed the ethical review of evaluations of interventions that would occur whether or not the evaluation was taking place. We concluded that standard research ethics frameworks including the Ottawa Statement, which requires justification for all aspects of an intervention and its roll-out, were a poor guide in this area. We proposed that a consideration of researcher responsibility, based on the consequences of the research taking place, would be a more appropriate way delineate the scope of research ethics review. Weijer and Taljaard present a counterargument to our proposal, which we address in this reply. They claim that a focus on researcher responsibility will weaken the protection of research participants and link it to ‘unethical research’ and a ‘government experimenting on its own people’. However, the moral responsibility of researchers is defined in terms of the consequences of the research on human welfare and harm, not in opposition to it. Weijer and Taljaard argue that researchers must justify what they are studying whether or not they have any control over it and that governments must justify their programmes, including by demonstrating equipoise, to a research ethics committee if they implement them in a randomised way. We strongly disagree that this is a defensible way to define the scope of research ethics review and argue that this provides no further protections to research participants beyond what we propose, but places a potential barrier to learning from government programmes.

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