20 June 2017

Revisiting Robust Regulation

Few can have missed media reports of the actions of Ian Stuart Paterson, the former breast surgeon who faced criminal charges on the basis that he had carried out “extensive, life-changing operations for no medically justifiable reason”. On Friday 28 April 2017, at Nottingham Crown Court, he was convicted of 10 counts of wounding with intent between 1997 and 2011, relating to nine women and one man, and three further wounding charges.  During the period in question Paterson was employed by Heart of England NHS Trust (as it was then) and also practised privately at Spire Healthcare. This blog considers some of the specific regulatory challenges that arise in this case, but also reflects upon the more fundamental question as to what might constitute “robust regulation” in these circumstances. 

review concerning Paterson’s surgical practice had previously been conducted in 2013, by Sir Ian Kennedy, at the request of the board of Heart of England NHS Foundation Trust.   At the outset of his report, he summarised the tragic story thus:

It is a story of women faced with a life threatening disease who have been harmed. It is a story of clinicians at their wits’ ends trying for years to get the Trust to address what was going on. It is a story of clinicians going along with what they knew to be poor performance. It is a story of weak and indecisive leadership from senior managers. It is a story of secrecy and containment. It is a story of a Board which did not carry out its responsibilities. It is a story of a surgeon who chose on occasions to operate on women in a way unrecognised by his peers and thereby exposed them to harm.”[1]

This highlights just some of the complex issues raised by the Paterson case.  Here also there are echoes of the organisational, cultural and regulatory failings that were identified in the 2013 report of the public inquiry chaired by Robert Francis QC into failings at Mid Staffordshire Foundation Trust (“the Mid Staffordshire Inquiry).

The lengthy background to Paterson’s recent criminal conviction makes difficult reading, in circumstances where it is reported that concerns had been raised by his colleagues as early as 2003 concerns had been raised by his colleagues as early as 2003[2]. The criminal conviction followed numerous investigations, with Paterson’s registration finally being suspended by the GMC in October 2012.[3] This had the effect that he restricted from practising as a doctor, either within the NHS or privately, in the UK.  This background prompts the same question asked of the Mid Staffordshire Inquiry, namely “why problems … were not identified sooner,and appropriate action taken?”[4]

A few weeks after the end of the criminal trial (17 May 2017), the Royal College of Surgeons (RCS) issued an open letter in response to the Paterson case, calling for a review of private sector transparency and safety standards. This letter also welcomed the Secretary of State for Health’s suggestion that an inquiry be conducted by the next Government to understand how Paterson was able to practise for so long.  In her introduction the President of the RCS, Miss Clare Marx, recognised improvements – such as appraisals and revalidation of doctors – that make the detection of “rogue doctors” more likely.  However, she further noted that: “…there are still a number of areas which require urgent improvements to protect patients from harm. Robust regulation remains an important way of protecting the public”.

Some of the regulatory challenges highlighted by the RCS include:

  • improving safety standards and data transparency in the private sector, and not just in the NHS.
  • scrutinising the private sector’s participation in clinical audits, and how this is enforced and monitored (for example by the Care Quality Commission).
  • examining better regulation of cosmetic surgery, which the RCS note happens almost entirely in the private sector.  In particular, they call for legislation to enable the General Medical Council to annotate the medical register with details of which surgeons are qualified to undertake cosmetic surgery.
However, leaving to one side for a moment these specific regulatory issues, Miss Marx’s statement raises the more fundamental question of what might constitute “robust regulation” in these circumstances.  In particular, does it simply mean more regulation? 

The report of the Mid Staffordshire Inquiry suggests not.  At the outset of that report Robert Francis QC listed the healthcare systems regulators and performance managers that had scrutinised the failing Trust in the relevant period.  This list included the Board, the local Strategic Health Authority, the Department of Health, Monitor and the Healthcare Commission.[5] The report went on to make the observation that: “It does not need a public inquiry to recognise that this elaborate system failed dramatically in the case of Stafford.”[6]  That Report’s recommendations were wide ranging and have shone a spotlight on issues of patient safety, quality of care, leadership, and creating positive organisational cultures. Thus, while regulation can provide a framework within which the practice of medicine takes place, it cannot necessary dictate or direct the culture of human practices that prevail over time.

As the RCS have stated:

 “The actions of Ian Paterson are beyond comprehension. Throughout the private and public health service, we must now try and understand what more we can do to prevent this from happening again and to take action to improve patient safety more generally.” 

How this learning will be delivered is beyond the scope of this blog post – as flagged above, there may be a public inquiry in due course.  However, if we are to move beyond a call for more regulation, this will require deep scrutiny around the roles and limits of the law in regulating health related issues, and the relationship between robust regulation, professional practices and ethics, and public protection as a matter of the central mission of all public health institutions. 

9 May 2017

What is a festschrift?

By Graeme Laurie

Book Review: Law, Ethics, and Medicine: Essays in Honour of Peter Skegg, Mark Henaghan and Jesse Wall (eds), (Wellington; The Law Foundation/Thomson Reuters, New Zealand, 2016)

What is a festschrift? I do not ask this question for want of an Oxford English Dictionary (real or virtual), but rather out of genuine intellectual curiosity and professional commitment to ensuring that academic work continues to make distinctive and valuable contributions. As a minimum, a festschrift is a liber amicorum –a book of friends– as highlighted by Ron Paterson in the Foreword to this collection. It is undoubtedly an opportunity to demonstrate admiration for a colleague, and this is abundantly evident in this book. Having never met Peter Skegg, I am nonetheless struck by the warmth and affection in which he is held among contributors for his collegial commitment, kindness, wisdom, mentoring, intellectual leadership, unfailing drive towards quality, and pioneering contributions. The descriptions of Peter Skegg as humble and whimsical invoke a deep regret that our paths have never crossed. And this sentiment is a good thing because, at base, a festschrift must reflect a sense of the person not only as the academic, but also as an individual. In this respect, this volume succeeds admirably throughout.

But, what else is a festschrift? As I write, I realise that perhaps I am asking the wrong question. Let me rephrase: what has a festschrift, in law, become? It is timely to ask this question because the age of the first pioneers in medical law is coming to an end. The moment of the festschrift is upon us. It is noted in this book, for example, that Peter Skegg has enjoyed a 46-year academic career at the Universities of Auckland, Oxford, and Otago. There are multiple examples in the book of his works being truly seminal in exploring new territory in the nascent discipline. However much we might argue and angst about when medical law began, there can be no credible history of the field that does not include accounts of the works of Skegg. The period starts particularly in the 1970s, but also – we learn – with ‘Capacity of a Minor to Consent to Medical Treatment’ in 1969. This time frame saw other key figures emerge, particularly in the United Kingdom, and each now has a festschrift of their own. Beyond Ian Kennedy and Andrew Grubb (both of whom moved on to other endeavours), we have the publication of First Do No Harm in honour of J Kenyon Mason in 2006,[1]and other festschrifts for Sheila McLean in 2015,[2] and for Margaret Brazier in 2016.[3]  Moreover, just as Peter Skegg is lauded as ‘one of the two fathers of medical law’,[4] so too have Mason, Brazier and McLean been hailed as parentibus of the nascent discipline.[5] If ever there was a good reason to produce a festschrift, it is when there is a sound claim to have shaped an entire discipline in its own right. There is a wealth of evidence in this book of the robustness of any such claim for Peter Skegg. In terms of breadth, Skegg has written on a staggering array of topics that would overwhelm the contemporary medical lawyer. As highlighted in the Foreword, these include informed consent, termination of life support and the law of murder, the legal definition of death, body as property, HIV/AIDS, health research, experimentation on children, and patients’ rights. As to their significance, it is here that we get to the crux of the added value and importance of the festschrift. What has Skegg said (for whom we could replace Kennedy, Grubb, Mason, Brazier and McLean) that is, or has been, of any import? Why should we pay attention, and why should we continue to listen?

This returns me to my question: what has the festschrift, in law, become? If it is seemingly a random collection of contributions from academic friends, then this is the liber amicorum mentioned above, but it does not differentiate the intellectual contribution of the festschrift from the ubiquitous edited book. In the same way that the good edited collection must focus in and around a theme(s), so too the good festschrift must focus in and around the academic at its heart. Also, reflecting comment above, in medical law we are genuinely reaching an end of an era both in the development of the discipline and for the contributions of these pioneers. Kennedy and Grubb have already moved on, McLean is retired, Brazier serially succumbs to pressure to continue, and sadly Mason passed away in January 2017 after 22 years as Honorary Fellow in Edinburgh Law School.[6]

In the works honouring these colleagues, we should be able to discern a strong sense of their intellectual legacy. Can we do so with this collection honouring Peter Skegg?

One of the editors, Jesse Wall, provides a summary of each of the twelve contributions. This is helpful, and saves this writer the task of doing so in the style of the standard book review. But, this is also valuable for this review precisely because I am suggesting that we must move beyond what is standard when it comes to the festschrift. For Skegg’s book, I suggest that we can find examples of at least four dimensions of the contemporary (legal) festschrift in terms of how a colleague is being honoured: (i) honour through inclusion of work; (ii) honour through collegiality, (iii) honour through continuation of tradition, and (iv) honour through intellectual legacy. In what follows, I do not suggest that these categories are hard and fixed, nor that they are exhaustive, nor that any one contribution fits only into one category. Rather, I offer these insights for future contributions and editors alike to help us all to reflect collectively on the role and value of the festschrift.

Honour through inclusion

To have a festschrift prepared in one’s name is indeed an honour; but the converse is also true: it is an honour for certain colleagues to include their work in your festschrift. The quintessential example of this is John Keown’s contribution in Law, Ethics, and Medicine on ‘Debating Euthanasia: A Reply to Emily Jackson’. This is an unashamed continuation of the recent book, Debating Euthanasia,7 in which Keown and Emily Jackson wrote blind essays from diametrically different perspectives. This approach and the calibre of the contributions have already made that book a central element in medical law teaching. Keown had stated that he would write a reply after he read his opponent’s views. This chapter in Skegg’s festschrift is that reply, both to Jackson and also to reviewers of the original text. As a stand-alone contribution, its quality is unassailable. As a tribute to Peter Skegg, this is conveyed by its inclusion, but there is little evidence of engagement with Skegg’s multiple works on the topic. More evidence of direct engagement is found in the chapter by Lemmens and Kurz on ‘The Future of Medically-Hastened Death in Canada’. The authors use Skegg’s prediction in 1988 that the gradual lessening of influence of the concept of sanctity of life will impact greatly on legalisation of medically-hastened death: they suggest that this in part explains the current Canadian position, and they examine the consequences as a result. In yet another contribution by John Dawson on ‘The Powers Conferred By Community Treatment Orders’ we are offered a detailed account of powers under mental health law to supervise treatment of compulsory psychiatric patients, but again the voice of Skegg is absent.

Honour through collegiality

The range of antipodean contributors to this book is impressive and speaks volumes about the regard in which Peter Skegg is held. Colleagues who have themselves made long-standing contributions in the field continue to do so here. Thus, we have Loane Skene on ‘Proprietary Rights in Human Bodily Material: Recent Developments’, and Mark Henaghan with colleagues Ruth Ballantyne and Devon Helm on ‘Genes Versus Gestation” Protecting the Interests of Surrogate Mothers’. Skegg’s mentoring influence is very visible in Joanna Manning’s chapter on compensation for research-related injury in commercially-sponsored clinical trials in New Zealand.

Honour through tradition

In contrast, the chapter by Margaret Brazier on ‘The Criminal Process and Medical Practitioners: Shield or Sword’ is a tribute to the fact that much of Skegg’s work has been influenced and impacted by the criminal process. It is easy to forget today that medical law had to fight for its corner. Historically, it was dismissed, variously, as an aspect of tort and/or public law and/or criminal law. In adopting an historical account of the medical profession’s changing relationship with criminal law in its own attempt to regulate quackery, Brazier does justice to Skegg’s own interest in the persistent role of criminal law in the emergence of medical law and the modern medical profession. It is also important to remember that tradition starts with inspiration. Josephine Johnston’s piece entitled ‘If Thy Leg Offends Thee, Cut It Off: Surgery, Consent and the Criminal Law’ is testament to Peter Skegg as a mentor. The topic of body dysmorphia has emerged in recent years and Johnston’s proposed research topic clearly caught his intellectual attention. The chapter is the culmination of their academic relationship and will doubtless continue Skegg’s tradition of walking and exploring the medical/criminal divide. Tradition is also about enduring influence. In a gripping chapter by Nicola Peart on ‘Health and Disability Research Ethics Committees in New Zealand: Will the Current System Prevent Another “Unfortunate Experiment”?’, we are privy both to the NZ ethics review system and how it has changed over time, and also – most intriguingly – to a behind-the-scenes history of influences, particular from Peter Skegg. The enriching value of this chapter is considerable, seen most strongly in its Appendix that attempts to capture the experiential backdrop. Precisely this kind of added value can come from the festschrift format.

Honour through intellectual legacy

In this final section, I group three chapters that do the most work to engage with Peter Skegg’s intellectual contributions. They offer real insights into where and how these might endure. Jonathan Herring’s title speaks for itself: ‘Peter Skegg and the Question No-One Asks: Why Presume Capacity?’. Herein Herring revisits an early article by Skegg that adopts a paradigm-flipping stance and argues for its correctness, but he also shows why he – as a successor academic – would take this even further. In similar style, Marie Bismark’s insightful chapter on ‘Lifting Our Gaze: An Epidemiological Approach to Medical Regulation’ takes Skegg’s work to the next level, so to speak, by arguing for the benefits of having been taught by Skegg and his brother, David, an epidemiologist. This chapter is a wonderful example of next-generation socio-legal-scientific scholarship. Finally, the last word goes to one of the editors, Jesse Wall, who argues eloquently from Skegg’s own position on rights about principles of justice and the New Zealand Code of Patients’ Rights – leaving a disjunct between pragmatism and principle in future directions of protection.

In sum, each of these types of contribution will be found in other festschrifts. I offer this categorisation to alert all of us in academia to our public responsibility to ensure that we always strive to deliver added value through academia.

Notes and References

[1] Sheila A.M. McLean (ed), ‘First Do No Harm’ (Ashgate, Aldershot, 2006). 
[2] Catherine Stanton, Sarah Devaney, Anne-Maree Farrell and Alexandra Mullock (eds), ‘Pioneering Healthcare Law: Essays in Honour of Margaret Brazier’ (Routledge, Abingdon, 2016). 
[3] Pamela R. Ferguson and Graeme T. Laurie (eds) ‘Inspiring a Medico-legal Revolution: Essays in Honour of Sheila A.M. McLean’ (Ashgate, Aldershot, 2015).
[4] Attributed in the book to Andrew Grubb, ‘Glanville Williams: A Personal Appreciation’ (1998) 6 Med L Rev 133 at 136. 
[5] See Stephen Smith, ‘Catherine Stanton, Sarah Devaney, Anne-Maree Farrell and Alexandra Mullock (eds), Pioneering Healthcare Law: Essays in Honour of Margaret Brazier’; Pamela R Ferguson and Graeme T Laurie (eds), ‘Inspiring a Medico-Legal Revolution: Essays in Honour of Sheila McLean’ (2017) 25(1) Med Law Rev 165-175. 
[6] In honour of Ken Mason: http://masoninstitutekenmemories.blogspot.com.es/.
[7]Emily Jackson and John Keown, ‘Debating Euthanasia’ (Hart Publishing, Oxford, 2012).

30 March 2017

Scotland’s Turn Towards ‘Realistic Medicine’: What’s in a Name?

By Edward Dove
Unfortunately, I never had the honour, privilege and pleasure of meeting Professor Ken Mason, having arrived at the University of Edinburgh shortly after he stepped away from the Law School. Yet, through affectionate and humorous stories shared with me from Graeme Laurie and colleagues, I quite quickly came to understand the tremendous and memorable impact Ken had on people, on institutions and on disciplines. Upon Ken’s passing, Graeme inspired me to commemorate this kind, sage, admired Professor by writing a short piece on a topic about which he was vocal (and from what I hear, there were many such topics!). One topic was the ‘individualistic’ turn in medical law, which apparently rather vexed him. This is a topic which interests me – and sometimes vexes me as well – particularly in the context of autonomy and privacy, seen perhaps most starkly in human rights claims grounded in Article 8 of the European Convention on Human Rights. On this, Graeme, I and other colleagues in the Liminal Spaces Project explored in an article analysing an intriguing European Court of Human Rights case on the nature and scope of the right for relatives to consent to or to oppose the removal of a deceased person’s tissues.

Continuing the topical thread on the ‘individualistic’ turn, of which Ken was a major sceptic, here, I want to explore Scotland’s inchoate turn towards something called ‘realistic medicine’. Given the brief space acceptable for a blog piece, I merely want to pose some critical questions for thought. After a brief overview of what ‘realistic medicine’ entails, I query whether it represents yet a further example of an individualistic approach in medicine, and also query what might be the impact on collective responsibility and provision of care by the state. Though I sincerely lament having never met Ken, one can only hope that this short piece serves in some way as a small but genuinely heartfelt token of gratitude and commemoration for this giant in medicine, law and ethics.

The dawn of ‘realistic medicine’

In January 2016, Scotland’s new Chief Medical Officer (CMO), Catherine Calderwood, introduced the concept of ‘realistic medicine’ in her first annual report. The impetus behind this concept is somewhat vague, but it seems to stem from perceived ‘times of challenge’ in the NHS, namely the ‘increase in demand for services in an age of austerity’ that ‘requires us to achieve more through better use of resources’. To this end, the CMO cited a 2015 Audit Scotland report that called for a ‘fundamental change’ in the way NHSScotland delivers services to cope with increasing demands for services and to increase the pace of change. Audit Scotland’s report was blunt in its assessment:

Significant pressures on the NHS are affecting its ability to make progress with long-term plans to change how services are delivered. Tightening budgets combined with rising costs, higher demand for services, increasingly demanding targets and standards, and growing staff vacancies mean the NHS will not be able to continue to provide services in the way it currently does. Together, these pressures signal that fundamental changes and new ways to deliver healthcare in Scotland are required now.

If the impetus is financial austerity and increased demand in services, then what exactly constitutes ‘realistic medicine’? – and is it the right remedy for the identified challenge? In her 2016 report, the CMO identifies six aims behind ‘realistic medicine’:

1) build a personalised approach to care;

2) pivot to shared decision-making;

3) reduce unnecessary variation in practice and outcomes;

4) reduce harm and waste;

5) manage risk better; and

6) encourage health professions to become improvers and innovators.

The aims are not explicitly underpinned by any delineation of principles (though reference is made to ‘principles of realistic medicine’ several times) or reference to statutes, so making sense of what realism in healthcare really means presents lawyers and ethicists with their own interpretive challenge. As the CMO’s 2017 annual report elaborates somewhat helpfully: ‘Realistic Medicine puts the person receiving health and care at the centre of decision-making and creates a personalised approach to their care. It aims to reduce harm, waste and unwarranted variation, all while managing risks and innovating to improve. These concepts will be essential to a well-functioning and sustainable NHS for the future.’ While seemingly focussing on the individual patient in the complex array of resource decisions to be taken, the statement also engenders several unanswered questions regarding values, vision and priorities.

Some strengths…

There are parts of the reports worth applauding – parts that I suspect Ken would also applaud. The CMO herself touts the ‘positive’ support for her 2016 report, stating that the Twitter hashtag #realisticmedicine reached ‘almost 10 million Twitter feeds a year after publication’. Foremost praiseworthy is the rejection of paternalistic communication patterns and instead the endorsement of the shift towards a shared decision-making approach between health professionals and patients. This instantiates the core message behind the Supreme Court’s 2015 ruling in Montgomery v Lanarkshire Health Board. Specifically, the CMO should be applauded for encouraging the NHS to develop a better understanding of people’s needs and the factors influencing how decisions are made and consent provided. As the 2017 report observes: ‘Central to this is the principle that the relational factors underpinning conversations about care need to support a partnership based on openness, trust and communication.’ However, whether this ‘principle’ forms a part of ‘realistic medicine’ itself is unclear, as is precisely what the principle comprises.
Another aspect of ‘realistic medicine’ worth cheering is the recognition that there can be overtreatment of patients that causes waste in the health service system and harm for patients (something NHS England also recognises and is addressing). The reports note that this is disconnected from funding concerns – even if there was money in the NHS, overtreatment and waste are serious cause for concern. Laudably, the reports highlight efforts to realise this goal of reducing overtreatment and waste, including the proposed development of a single national formulary and a ‘Scottish Atlas of Variation’ to identify unwarranted variation in care.

…and some faults

However, there is also some room for concern. Reading the 2016 and 2017 reports together, two fundamental questions arise: first, what is meant by ‘realistic’, and second, realistic for whom? Notably, unlike the 2016 report, the 2017 report defines realistic as: ‘1. Having or showing a sensible and practical idea of what can be achieved or expected. 2. Representing things in a way that is accurate and true to life.’ This adjectival addition tacked on to medicine itself begs a question: is this about tailoring our expectations of what current and future healthcare can provide for citizens, or is this about tailoring healthcare to our expectations of what a sensible system of care should look like? If the former, might it mean that we should expect reductions in treatment and care given the dwindling resources available, and that we should take great individual responsibility for our well-being? How is the ‘representation’ of reality to be made, and by whom? If the latter, on what shared principles and values will realistic medicine be based – and what structural changes must be made to realise the vision? Moreover, if we are to turn towards ‘realistic medicine’, just what kind of medicine has been practised to date?

Less clear still is for whom medicine should be realistic. Presumably, the CMO would respond: ‘realistic for everyone’ – patients, health professionals, regulators, and so on. Yet, it is far from clear that the goals set forth in these reports are realistic, much less ‘sensible and practical’, for each stakeholder. Will health professionals have the time and resources to engage in shared decision-making with patients, particularly if this involves saying No to patients seeking particular treatments? If ‘realistic medicine’ is about focussing on the ‘true value to the patient’, who will assess what this true value consists of, and what are the consequential effects on the needs and expectations of the patient, not to mention the taxpaying citizen? Will politicians be realistic in planning for the long-term stability of universal health and social care for an aging population that is incurring increased comorbidities that require social care just as much as healthcare? Indeed, it is worth noting that Scotland lacks a tradition of a whole-system approach to these social support structures, and there are on-going concerns about how this new health and social care integration will be delivered and managed. The specific concern here is that the ‘individual’ risks being characterised differently by two quite different systems, each concerned with its own priorities, limited budgets, and desire not to be overloaded.

What lies ahead?

It is in this conceptual and political haze that two practical worries emerge. First, there is apprehension that ‘realistic medicine’ serves as the latest trend in healthcare policy (akin to Wales’s ‘Prudent Healthcare’ movement) to advance the responsibilisation agenda of the individual patient – framed as consumer choice or a ‘personalised approach’ – but which comes at the expense of collective responsibility and solidarity. Here, I do wonder whether Ken would raise his eyebrows in scepticism. Does ‘realistic medicine’ represent a systemic improvement in care and greater respect for patients? Or, might it signal a further reduction of care to rational choice decisions premised on autonomous actors ‘taking responsibility’ for their own actions in an era of ostensibly increased consumer choice, but genuinely reduced public resources? To that end, might the new tone in medicine be: ‘I’m sorry – that’s just not realistic’?

Second and relatedly, there is worry that ‘realistic medicine’ masks or disregards the underlying structural impediments to realising a healthy healthcare system – ongoing cuts to the NHS, long-term vacancies in health professions, competition between services, added pressure on doctors – that unless addressed with structural solutions, simply will lead to inevitable disappointment and further impairment of the NHS.

Scotland is clearly charting a new path for the NHS. Let us watch and wait – but not passively – to see where this path may lead us. How may ‘realistic medicine’ be realised across Scotland in the coming years? One certainly hopes that it brings better care and respect for patients, better treatment of and respect for healthcare professionals, value for public money, and prevention of waste. At the same time, one hopes it does not produce further erosion of public trust, collective responsibility and social justice. I am confident that Ken, long dissenting of the individualistic turn in medicine, would share such a hope.

7 March 2017

Disabled Dancers: Agents of Change?

By Shawn H.E. Harmon

As Blades notes in ‘Narratives and Agency’,[1] a post on the AHRC project, ‘Resilience and Inclusion: Dancers as Agents of Change’[2] (itself a follow-on to the InVisible Difference Project [3]), it is our belief and ambition that disabled dancers are and ought to be agents of change.  This is in no small part a result of our observations that social justice is lacking in the culture creation setting, where those with disabilities have been marginalised and remain significantly under-supported.  However, as Blades suggests, agency is not at all straightforward, being tangled up, as it is, with social frameworks.  What measures of agency might we rely on to make judgments about whether the arts (and specifically dance) field is moving appropriately toward a greater social equality and representativeness?

Writing in the context of development and social justice, Sen argues that agency is a person’s ability to act in support of what she values and has reason to value, and that it is both intrinsically and instrumentally valuable.[4]  People with high levels of agency can more readily pursue actions congruent with their values, and those without may be alienated from their reality, or be forced to submit to conditions that they decry.[5]  So understood, agency clearly has both internal and external elements, but what elements exist and what do we need to attend to in the context of disabled dance to realise the objective of agency for change?  Sen offers five measures for analysing agency; according to Sen, agency:

1.      is exercised in relation to one’s wellbeing and goals;
2.      must be supported by ‘effective power’ (i.e., the power to achieve desired goals); though this may be exercised by a group rather than an individual, the individual must have the ability to influence processes and exercise choice;
3.      requires ‘capability’ (i.e., the space within which individuals might exercise ‘wellbeing freedom’, which itself might be other-regarding);
4.      is appropriately associated not only with values, but with goals the individual has a reason to value (and so might be differentiated substantively from raw autonomy);
5.      is associated with responsibility to understand one’s role in the prevailing conditions as well as that in realising alternative (better) conditions.[2]

There has been some useful work in support of disability and disabled dance, particularly since the Cultural Olympiad,[6] but what is the current state of the disabled dancer’s agency in relation to these measures?

Our findings in the InVisible Difference Project offer some grounds to believe that disabled dancers have made significant strides in (1) systematically advancing a reasonably cohesive set of goals, (4) articulating cogent and both culture- and rights-based reasons to value those goals, and (5) appreciating the responsibility that leadership imposes on those (pioneers) who have wedged their way into the conscience of the elite dance scene and the dance-viewing public.  However, that project has also demonstrated that disabled dancers are incredibly under-resourced and under-supported with respect to measure (2) and (3), a reality which continues to undermine the just advancement of their roles as creators of culture and agents of change.

This reality must be viewed as an affront to the human rights that disabled persons/dancers hold under the Universal Declaration of Human Rights, the UN Convention on the Rights of Persons with Disabilities, and the European Convention on Human Rights.  And many actors have been complicit in the deficiencies that exist, from arts funders, to dance organisations, to memory institutions, to dance critics, and more.[7]  Disabled dancers need to be much more effectively facilitated in exercising their agency if they are ever to adequately perform their desired, demanded and deserving role as ‘agents of change’, and become equal (and celebrated) creators of culture.

The Online Toolkit mentioned by Blades and the associated film described by Brown,[8] both being developed in the Resilience and Inclusion Project, are just two small steps in the many that are needed to realise this objective, others being further research to ascertain the state of the shortfalls in the above measures.  Let us hope that more funding is made available to help generate the ‘effective power’ and to open up the ‘capability spaces’ that are so needed for real change to occur.

Notes and References

[1] H Blades, ‘Narratives and Agency’, 4 December 2016, at https://invisibledifferenceorguk.wordpress.com/2016/12/04/narratives-and-agency/.
[2] Resilience and Inclusion: Dancers as Agents of Change, at https://invisibledifferenceorguk.wordpress.com/.
[3] InVisible Difference, at http://www.invisibledifference.org.uk/.
[4] A Sen, Wellbeing, Agency and Freedom: The 1984 Dewey Lectures’ (1985) 82 J Philosophy 169-221, at 206.
[5] Ryan and Deci, Autonomy is No Illusion: Self-Determination Theory and the Empirical Study of Authenticity, Awareness and Will’ in J Greenberg et al. (eds.), Handbook f Experimental Existential Psychology (NY: Guilford Press, 2004) 450.
[6] M Sinclair, ‘The 2012 Cultural Olympiad: From Initial Planning to Final Delivery and Beyond’ (2014), at https://www.britishcouncil.jp/sites/default/files/moira-sinclair.pdf.
[7] S Whatley, C Waelde, S Harmon, A Brown, ‘Validation and Virtuosity: Perspectives on Difference and Authorship/Control in Dance’ (2015) 6 Choreographic Practices 59-83.

[8] A Brown, ‘Words, Bodies and Film: The Start of a Journey’, 16 December 2016, at https://invisibledifferenceorguk.wordpress.com/2016/12/04/narratives-and-agency/.

2 March 2017

Research in the context of global health emergencies: writing a background paper for the Nuffield Council on Bioethics.

By Agomoni Ganguli-Mitra and Nayha Sethi

Health care workers at JFK hospital in Monrovia prepare to go into the Ebola ward. © 2014 Kevin Sieff/The Washington Post, Courtesy of Photoshare
In 2016, in the wake of the Ebola and the Zika outbreaks, the international community’s response to global health emergencies and their associated moral, regulatory and political implications once again came under intense scrutiny. For the bioethics and governance communities these were real challenges, forcing us to revisit some of the most difficult ethical questions around pandemics, such as health inequality, weak health system and access to care, and reproductive health. The challenges were all the greater for having to address them within the global (heterogenous) regulatory systems. The response to Ebola for example, developing at the intersection between humanitarian response, care, and research activities - each with their values and goals - brought into question well established ethical norms and practices. It was against this background that the Nuffield Council on Bioethics launched a call to commission research on research in the context of global health emergencies.

We were fortunate to win the commission to take on this work. The brief was clear: we were to produce a background paper on the ethical and governance issues raised by research in the context of global health emergencies. The result was a challenging, but extremely interesting experience for both of us. As newcomers to the topic, there were unexpected obstacles. For example, we spent quite a few hours questioning what might, or might not count as a global health emergency. We also faced obstacles many academics will be familiar with: how to reduce a wealth of literature (relevant regulatory and governance tools, laws, partnerships, practices, actors, cases, practices and lessons-learned) into a short, comprehensive document that would be accessible, and of use to the Council.

In the end, however, teasing out some of the conflicts was one of the most interesting exercises. For example, in the particular context of infectious diseases, how do we reconcile the ‘moral obligation to learn as much as possible, as quickly as possible’ (WHO 2016) with the seemingly equally important norm of not sacrificing care for the sake of conducting research? Perhaps unsurprisingly, then, our concluding section was organised around various sets of tensions:

1. Tensions between ‘response’ and ‘research’: for example, how can care, research and innovation co-exist efficiently and ethically?
2. Tensions within research: for example to what extent can we develop anticipatory ethical and regulatory frameworks for research during epidemics, in a context where oversight and governance need to be particularly sensitive and responsive to evolving and emerging situations?
3. Tensions arising in priority-setting and collaboration: for example, when engaging local, regional and global communities, how do we ensure that all voices are heard and differing priorities are taken into account?

It is not often that academics witness their work being put to immediate practical use. In this case, our background paper served to inform a workshop at the Nuffield Council on Bioethics, to which we were also invited. The event brought together
scientists, physicians, responders, regulators, ethicists and other stakeholders to discuss some of the issues arising from the paper. We have certainly been inspired to think in-depth about some of the issues we encountered while writing. We are grateful to the Council for providing us with the opportunity to do so, and we look forward to continuing to contribute to this important field.

The background paper can be accessed here.

14 February 2017

Why a sugar tax? What the UK can learn from Mexico

By Isabel Fletcher

What is planned and why?

In the March 2016 Budget Statement, the UK government announced that from April 2018, it would tax some sugar-sweetened drinks. Beverages will be taxed at one rate for medium-sugar drinks (5 to 8 g per 100ml), and a higher rate for high-sugar beverages (more than 8g per 100ml). Although often described as a 'sugar tax', it won’t apply to all sugar-containing drinks - flavoured milks and yoghurt drinks will be exempt because of their calcium content.

Sugar-sweetened beverages (SSBs) are one of a number of so-called 'discretionary foods' that are high in calories and low in nutritional value. The UK Scientific Advisory Committee on Nutrition describes their consumption as a risk factor for weight gain and type 2 diabetes. Rates of obesity and diabetes continue to rise in the UK, despite initiatives such as the Change4Life campaign.

1 December 2016

Recent Reports Highlight Key Issues in Regulating Elderly Care

By Catriona McMillan and Nayha Sethi

A recent investigation by the BBC has raised concerns regarding the treatment of individuals in the care home setting. This brings to the fore a number of ethical and legal issues which, considering the increase in ageing population, invite closer scrutiny.