Last night BBC2 broadcast a documentary entitled ‘A World Without Down’s?’ Even if you did not see the programme itself, you may have heard about it on the radio, read some of the commentary published over the past week or spotted it on twitter under hash tag #worldwithoutDown’s. It was one of these advanced trails, specifically the presenter’s appearance on Frank Skinner’s On Demand, that first drew my attention to the programme. Here Sally Philips talks about Peter Singer’s appearance on Hardtalk and, whilst she is hardly alone in doing so, I felt that she misunderstood what Singer has to say. As a result I intended to watch the documentary to see which bioethicists appeared and if their views were represented accurately.
Despite the programme consisting of Philips speaking with various people involved with this issue – including doctors, scientists, individuals with Down’s syndrome and their parents, those who run support groups and one brave women who had terminated a pregnancy following a positive test for Down’s – she did not actually speak to a bioethicist or, indeed, explicitly discuss any bioethical ideas [edit: although, see addendum at the foot of this post]. Thus, whilst one could think that this documentary was about a bioethical issue – prenatal testing and screening for Down’s Syndrome - there was not any real discussion of the matter from a bioethical perspective.
Whilst there are ethical concerns common to most social scientific research many of the issues that arise in the course of conducting such projects are highly contextual and even idiosyncratic. As such it can be difficult to fully grasp the ethics of social science research. As with everyday life, the field’s ethics are resistant to being captured by succinct, conceptually tight, principles that can be used to frame and analyse research proposals and difficulties that arise in the course of conduct research. Whilst five generic ethical principles resulted from the work recently undertaken by the Academy of Social Science’s Research Ethics Group, and have influenced the recent revision to the ESRC’s Framework for Research Ethics, they have a more discursive nature than their biomedical counterparts.
As many have noted, it would be helpful if a library of illustrative ethics case studies were available for researchers to draw on. Given that a set of such cases would reflect and compliment the existing Case Studies in Research Methods built up by Sage over the past few years, I have agreed to select and edit a series of short (3-5,000 words) essays focused on the ethical dimension of specific research projects and relate ‘what actually happened.’ The purposes of these cases is not to offer a dry ethical analysis or to reduce a case to its principles. Rather the aim is to illustrate and illuminate the ethical dimension of social scientific research as it is conducted or practiced.
Call for Chapters
Following an event organised by the BSA / Academy of Social Sciences on the topic in May 2015 I am editing a collection of essays to be published under the (working) title ‘Virtue Ethics in the Conduct and Governance of Social Science Research.’ The contract for the book has been signed and it will appear in 2017. The structure of the book is as follows:
Section 1: Virtue and Integrity in Social Science Research
Section 2: Virtue and the Review/ Governance of Social Science Research
Section 3: Phronesis in the Conduct and Governance of Social Scientific Research.
The first two sections of the book will contain the papers given in 2015, whilst the third section has resulted from the interests of additional contributors.
I am interested in hearing from potential authors for chapters in each of these sections. If there is a particular motivation to add a section this may be possible. To discuss a proposal please contact me at email@example.com
The other day I read an article ‘Procedural Moral Enhancement’ written by Schaefer and Savulescu and recently published in Neuroethics. The argument can be summarized as follows: All things being equal a procedural approach to moral deliberation can improve the quality of that deliberation and the reliability of its conclusions. Moral deliberation that is conducted in accordance with their procedural approach is ‘generally acceptable across a wide range of normative and meta-ethical theories’ (p.2) and, more than this, is said to be neutral with respect to the substantive content being addressed. Thus advocating for moral (bio)enhancement is an ethically neutral proposal when such enhancement targets the abilities or skills (intelligence, empirical competence, openness to revision, empathetic understanding, and bias avoidance) that support procedural deliberation.
Although this procedural approach is a not uncommon Rawlsian position there is no acknowledgement of the almost equally common critiques of its ‘liberal neutrality’ rooted in feminist perspectives (see Anderson’s fantastic book which does similarly for the related Habermasian attempt to proceduralise moral debate in the public square). Whilst this is a failing of the paper, there is something more interesting at play. Whilst this essay purports to be about moral enhancement and/ or bioenhancement very little is actually said on this point. There is no mention of this, that or the other bioenhancing neurochemical, merely a note that “our proposal suggests a promising approach to moral bioenhancement … [and m]any of the capacities we identify should be susceptible to biological improvement, at least in principle” (p.11). Somewhat drily the authors subsequently state: “much more research needs to be done in this area before interventions can be seen as viable” (p.11).
Over recent weeks the FBI has been attempting to legally compel Apple to help them access an iPhone belonging to a suspected terrorist. This is, it appears, one of a number of similar endeavours in what is and will continue to be a larger effort by the FBI and other intelligence agencies to ensure they can access the increasing variety of devices that many of us now have.
Having just won a similar case Apple seem in a strong position to resist further legal arguments that would have compel them to provide assistance in this and comparable cases not least because it would require them to undermine the security of its own products – the consequences of which are succinctly [summarised by this cartoon] by Stuart Carlson.
Drawing on the extended mind thesis first put forward by Andy Clarke and David Chalmers, philosopher Matthew Noah Smith [has argued] that iPhones can be considered an extension of our minds. First, the way we using them to store information can be seen as an expansion of our memories. Not only do we use them to record information - photos, shopping lists and passwords - that we either cannot or do not wish to memorise they can now automatically present us with that information according to spatial, temporal and cybernetic prompts - we are reminded about meetings in a timely fashion, to pick up garlic when near the supermarket and our passwords are provided automatically when we log-in to a wide variety of sites.
Earlier in the year I co-authored a paper in BMC Medical Ethics. It was part of a cross-journal special issue on the Many Meanings of Quality in Healthcare and argued that the evaluation of ‘care’ held significant potential for symbolic violence. The main thrust of my paper was that the auditing of specific health and social care institutions necessarily involved a certain level of bureaucratic standardization. As such, the work of bodies like the Care Quality Commission (CQC) involve the imposition of a formal evaluative framework, one that reduces the thick context(s) of practice and care to a thin, semi-quantified, account structured by the requirements and imperatives of bureaucratic evaluations and a culture of audit. In short, bodies like the CQC are organized so that, albeit implicitly, they care less about the quality of care than they do the bureaucratic evaluation of the quality of care. Put another way, we might say that our ability to audit the quality of care lacks a certain degree of nuance and, therefore, quality.
NHS Blood and Transplant service (NHSBT) recently published their Organ Donation and Transplantation Activity Report for 2104/15. It shows that there has been a 3% fall in the number of individuals who become post-mortem organ donors. This is the first time in 11 years that there has been a fall and reporting of the figure has been accompanied by calls for the UK as a whole to move to an ‘opt-out’ system of registration; a system in which consent to donation is presumed. The context for this call is that against expectations a 2008 report by the Organ Donation Taskforce took the view that it would be premature to change the UK’s system of registration to one where consent was presumed. Instead it recommended that other methods of increasing the number of organs available for transplant should be pursued. Subsequently, between 2008/09 and 2013/14, there has been a 50% increase in the number of post-mortem organ donors. Thus, whilst this recent fall is discouraging it comes on the back of significant progress, progress that has met the targets set out in the 2008 .
The cost of treatment is one of the biggest areas of the NHS budget and, whilst it is not often discussed openly, such costs need to be managed and controlled just like any other expenditure. However, given their implications for people’s health, such decisions need to be approached with care and taken in a consistent manner. Neither elected politicians nor frontline clinicians can realistically be expected to do so. In the case of the latter the cost of treatment cannot be considered directly if healthcare professionals are to maintain the trust of patients. David Cameron’s ‘Cancer Drug Fund’ provides an example of the problem in the case of the former. Simply put, the fund circumvents NICE – the body responsible for considering the cost effectiveness of treatments – and the principles that guide decision-making about the affordability of expensive drugs. This fund illuminates something of the difficulties that occur when, for one reason or another, debates about the allocation of resources become politicised.
I have been blogging about the 2014 Reith Lectures currently being given by Atul Gawande. This is the final part, Part 4, and is related to Gawande’s fourth talk entitled Part 3, which responds to the third lecture’The Problem of Hubris’ is here. Part 2, which responds to the second lecture ‘The Century of the System,’ is here. Part 1, which responds to the first lecture ‘Why Doctors Fail,' is here.
In his final Reith lecture, recorded at the India International Centre in Delhi, Gawande addressed The Idea of Wellbeing. Gawande starts the lecture with some family history. His parents were both from India and his family’s fortunes have changed significantly in just three generations. This is used to illustrate the changing nature of public health in ‘advancing economies’ like India. Previous issues concerning malnutrition and diarrhea are increasingly giving way to Western illnesses like diabetes and hypertension. The message is that the major challenges to population health are changing from the acute to the chronic and the responses require a shift in perspective from health to wellbeing or, one might say, being well. Solutions, if indeed there are any, are less about infrastructure, like the provision of clean water, and more about social structures, our individual and collective behaviors, the way we eat, exercise and lead our lives.
I have been blogging about the 2014 Reith Lectures currently being given by Atul Gawande. This is Part 3, and is related to Gawande’s third talk entitled ’The Problem of Hubris.’ Part 2, which responds to the second lecture ‘The Century of the System,’ is here. Part 1, which responds to the first lecture ‘Why Doctors Fail,' is here.
In this weeks lecture Gawande again spent a lot of time recounting an illustrative case. This time it was about a family friend who had a recurrent cancer that ultimately proved untreatable. The purpose of the story is, first, to show the difficulty doctors have when dealing with patients whose conditions are terminal, second, to consider how healthcare professionals can help these patients to live well whilst dying and, third, to examine the connection between these two phenomena.
The difficulties medical professionals have when dealing with death and dying seems to provide the inspiration for the lecture's title - The Problem of Hubris. However, it seems a little ungenerous to think that individual doctors are reluctant to talk to patients about death and dying because they have an 'over-weaning confidence' in their ability to treat patients. After all the empirical evidence clearly augers against such presumptions. Rather, much like the rest of us, I think healthcare professionals find talking about death and dying difficulty and emotionally challenging. It is easier for them to retreat into their socially sanctioned roles and provide the patient with medical facts and information.
I have been blogging about the 2014 Reith Lectures currently being given by Atul Gawande. This is Part 2, and is related to Gawande’s second talk entitled ‘The Century of the System.’ Part 1, which responds to the first lecture ‘Why Doctors Fail,' is here.
Gawande devoted much of this lecture to recounting the case history of a three-year-old child who plunged through the ice into a pond, spent thirty minutes under water and ultimately survived with no apparent negative consequences. The tale is, I think, designed to illustrate the value of a systemic approach to medical practice. The young girl’s life was saved as a result of a lot of different interventions happening at the right time and in the right order over the course of at least 2 days. As one of the commentators following the lecture pointed out, this is a highly unusual occurrence. Certainly people who drown in warmer conditions will die. Thus, in this case, the circumstances of the injury are an important part of medicines ability to save the lives of people like this young girl.
Atul Gawande is one of those sickeningly accomplished individuals who succeeds at everything they do. His day job is surgery but he is world renowned for his work on healthcare and healthcare systems. I have found his previous writing stimulating but have not yet read his latest work Being Mortal. He is giving this year’s Reith Lectures and I am going to try and write something on each one.
This is Part 1, and is related to Gawande’s first talk ‘Why Do Doctor’s Fail?’
Offering an enlightening mix of the personal and the professional the first of Gawande’s Reith Lectures addresses the question ‘Why do Doctors Fail?’ Whilst much of his career, particularly the Checklist Manifesto, has been concerned with the avoidance of preventable error and ensuring the practice of medicine meets the highest standards possible this lecture engages with a broader set of concerns.
To this end he makes use of a perspective set out by MacIntrye and Gorowitz in a 1976 article ‘Towards a Theory of Medical Fallibility.’ The articles subtitle - Distinguishing Culpability from Necessary Error - makes clear their view. There are medical errors for which medical professionals are responsible but there are others that are unavoidable: there can be no error-free medical practice.
What follows is the text of a brief talk I gave as part of QUB leg of a series of events run by Nuffield Bioethics concerning The Culture of Scientific Research
Towards a Vocational Ethics for Scientific Researchers
My name is Nathan Emmerich and I did my PhD here at QUB, looking at the ethical education of medical students. At the present time I am a Visiting Research Fellow in PISP where, amongst other things, I am writing about the idea of ethical expertise. I have also been part of the Academy of Social Science’s project on Generic Ethical Principles for the Social Sciences. If you are interested you can find out more about this project on the Academy website, including a position paper on ethics in social science research that concluded a major phase of the project. It is interesting that some of the broader questions that arose during the course of this work are reflected in the concerns expressed by yourselves in advance of this meeting. Part of what I am interested in is connecting what we normally think of as the ethics of research with these broader issues and, at least for the social sciences, I am trying to do so by moving away from talking about ‘research ethics’ and instead returning to the idea of a professional ethics or science as a vocation. I am going to try to illustrate these points by talking about Stanley Milgram’s infamous obedience experiments.
My pile of books to read over this past Christmas and New Year included Baker’s recently published ‘Before Bioethics: A History of American Medical Ethics from the Colonial Period to the Bioethics Revolution.’ I was asked to review it for Social History of Medicine and have duly done so (short version: it’s very good and you should read it if it is of interest to you or relevant to your work in anyway). However, one thing caused me some disquiet that, due to the constraints of length, I did not get the chance to address in my review. It is a very minor point and the relevant text in Baker’s book is about three pages long. Regardless, it has stayed with me so I thought I would tackle it here.
In his Chapter ‘Explaining the Birth of Bioethics, 1947-1999’ Baker has a section ‘Research Oversight: The Origins and Atrophy of Professional Self-regulation’ (p.281). It is subtitled ‘Percival’s Proposal for Research Ethics Committees.’ The reference is to Thomas Percival (1740-1804), a founding figure in the codification of medical ethics and, therefore, the professionalization of medicine i.e. the social institutionalization of medicine as a profession.* Interestingly Percival’s writings exerted their clearest and most immediate influence on the emergence of the American medical profession and not in the UK, where he lived and worked.
I have been thinking about love and marriage recently. No, I am not about to ruin someone’s life but, rather, have been trying to develop a response to a couple of recent papers which analyse the ethics of ‘(‘neuro’)enhancing’ love. The details of that need not concern us here as, in what, follows I want to discuss something Tauriq Moosa published on Comment is Free titled ‘We need to have a frank discussion about marriage’ and subtitled:
‘The reasons people normally cite for getting hitched no longer make sense. We should be asking: why get married at all?’
Of course, as autonomous and free (or ‘autonomous’ and ‘free’) individuals, and citizens of liberal democracies wedded to Mills’ Harm Principle, we do not generally need reasons to do something, as long as there is no reason – such as it will harm another - we ought not do it. Thus, one might legitimately respond, ‘why not get married?’ or, simply, ‘because I want to.’* Furthermore the article is not really a frank discussion of marriage but of four reasons we might think motivate people to get married, a quite different thing. However, given that we should not hold him responsible for the title or the sub-title of the piece - he is likely to have both placed over his work with little by way of consultation – it is perhaps best to turn to what he actually has to say.
Can the coroner inquire into the death of someone who was never born?
On Thursday the 21st of November the Court of Appeal in Northern Ireland (NI) gave its judgement in a case between the Attorney General for NI, John Larkin, and the Senior Coroner for Northern Ireland. The case concerned whether the Attourney General could compel the coroner to convene an inquest into a still-birth. The coroner had declined to do so, arguing that it did not fall within the remit of his office. Briefly, as the role of the coroner is to investigate deaths there had to be an individual who was, legally speaking, alive and had subsequently died. Thus, historically, NI and, for that matter, UK coroners have not held inquests into still-births. The lower court had upheld the position of the coroner and the judgement alludeds to some of the concerns I raise here.
The question of when life and, in particular, human life begins has been persistent and contentious in biology, philosophy, theology and law. In bioethical thought there are a number of different accounts where it is common to distinguish between the start of life and the point at which a human organism attracts moral importance. Furthermore we might think that the human organism has different moral weights depending on the state of its development or, for that matter, demise. Such consdierations lead in a variety of directions, not least to the provocative argument that neonates might not meet the requirements for ‘personhood’ and therefore should not be considered (full) members of the moral community. It is not easy to resolve these ethical conundra and they will continue to trouble bioethical scholarship for the foreseeable future. However, the law cannot afford the luxury of uncertainty. Whilst we might recognise some degree of complexity and attempt to mediate between competing demands, ultimately the law has to adopt a position on when the ‘human organism’ becomes an individual, recognised by law and, therefore, a (legal) person.
In a series of posts published over the past couple of weeks the increasingly influential blog Impact Ethics has been preoccupied with the question of whether whoever pays the piper calls the tune. In no small degree this debate is related to similar concerns about the corrupting power of money and wealthy corporations in medical research and practice. Given that this is a bioethical issue and given that the concerns being raised often relate to the same or similar sources of money the debate is an entirely legitimate one. Nevertheless, I have some thoughts about the way in which some of the issues involved are being considered or, rather, with the way certain assumptions are configuring the terms of the debate.
The first example I would like to discuss relates to the post by Alice Dreger. Here she strongly differentiates between judging acts and, rather emotively, judging souls by which she means people or characters. I certainly do not want to suggest that we should go about approving or disproving the souls of certain bioethicists and thereby grant or deny them moral authority. Similarly I do not wish to suggest that bioethicists should not judging, or at least criticise, 'real world' acts. Certainly they should. However, I think it is important to recognise that it is souls who act and as such they can carry out their actions in better or worse ways.
My book 'Medical Ethics Education: An Interdisciplinary and Social Theoretical Perspective' has been published. The publishers website is here, it is on Amazon here and on my academia.edu page here. If your library has access you can probably read it online and, if you really like it, by a 'My Copy' for about half price. The publisher has made Chapter 2 (Sociological Perspectives on Medical Education) freely available [.pdf here]. This chapter is mostly about the social theory of Pierre Bourdieu. Maybe they think it is the best one or maybe they think Chapter 1 (Some Relevant Concepts) is one of the main selling points! Either way, I'd love to hear what people think of it.
In a recently published report Dr Eve Garrard and Professor Steve Wilkinson argue that there is nothing unethical about embryological sex selection. Indeed, in the name of choice and allowing parents to fulfill their desires for male or female offspring, they argue that such selection should be available to those who want or, at least, those who can afford it. Their views go beyond permitting ‘family-balancing’ i.e. allowing those with 5 boys to finally have the girl they, or at least one of them, has always wanted. The author’s views support those who only desire a child or children of a particular sex. Whilst the report has much to recommend it - many of the arguments and much of the discussion they offer is clear, informative and fulfills what they call their fundamental aim, to be illuminating - there is something missing from the analysis.
The report, and its discussion, proceeds in largely asocial terms meaning that the family and parenthood are implicitly considered natural kinds. Thus the desire for a ‘balanced’ family or to parent a girl rather than a boy is constructed as an authentic desire. It is therefore construed as a legitimate and innocuous personal preference in the fulfillment of a - perhaps even the or the only - universal human purpose. However when they quote mothers who have a deep-seated desire to parent a girl it is clear that what they want is a particular, and gendered, relationship. Such relationships are fundamentally social and contain a normative dimension. This is not the formal normativity of an ethical rule but the cultural normativity of a gender role and of gendered relationships. Furthermore roles such as motherhood, fatherhood and being a daughter or a son are fundamentally relational, they exist between individuals. They are a function of society and are not the property of the individual in grand (cultural) isolation.
Following a report by the Human Fertilisation and Embryological Authority (HFEA), the chief medical officer for England, Dame Sally Davies, recently announced the UK government’s support for mitochondrial transfer. This procedure, developed by scientists at the University of Newcastle, can be used to prevent mitochondrial genetic diseases being passed on. Since the invention of the technique the media have been reporting on this possibility as involving the creation of ‘3-parent’ or, in the case of the Guardian, ‘3-person’ embryos.
Whilst this phrase certainly describes something about the science of the procedure it also codes for a certain sort of moral reaction. One only has to reflect on the recent social history of the family - of marriage and divorce - to realize the role this unit, a unit Pierre Bourdieu called a real-ised social fiction, plays in the moral landscape of contemporary culture. Whilst we may have come to accept the idea of the single (or is it lone or solo?) parent and the step (or is it blended?) family the idea of creating embryos with three biological parents – or is that from three biological persons? – still appears to have the power to provoke.