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.
Today (2/6/13) the devolved parliament of Wales will debate moving to an opt-out organ donor register. It is highly likely to vote in favour of the measure. If so there will follow a two year program of publicity before the measure is finally introduced. it appears that various initiatives surrounding organ donation, many recommended in a 2008 report by the UK's Independent Organ Donation Taskforce, have seen a rise in postmortem donation rates across the UK. I would expect this programme of publicity to provoke a further increase not only in donation rates but also in the number of individuals who register their wish to be a postmortem organ donor.
When surveyed, the majority of UK citizens report a willingness to be a postmortem organ donor [.pdf]. Unfortunately this percentage is not reflected in the number of citizen’s who sign the existing organ donor register. This fact is used to justify both asking the family of an unregistered potential donor for their views and for moving to an opt-out system of registration. However any opt-out system of registration adopted in the UK will be a so-called ‘soft’ opt-out system. Whilst an opt-out register will permit the registration of positive and negative views the family of any potential donors who has not registered a view will be consulted and, in practice, will have a large, and possibly determinate, say in the matter.
Appreciating the Politics of Psychiatry: Concerns over the DSM are part of a bigger issue concerning the power of the psychological and neurological sciences.
The relationship of psychiatry to the prevailing political context has always been troubling. In authoritarian environments, such as the USSR, psychiatry has been used as a relatively blunt tool of political repression. This can be paralleled with contemporary concerns about corporate influence. The worry is that a capitalist or overly marketised environment prepares the ground for the diagnostic criteria of psychiatric illnesses to be influenced by the available treatments ie by the available psycho-pharmacological drugs.
Although his suggestion that mental illness is a myth is overly polemical Thomas Szasz offered a more nuanced critique, one that exposed the subtle relationship between social norms, small "p" politics, and psychiatric knowledge. Some of the concerns raised by Szasz and other "anti-psychiatrists" can be discerned in recent debate, prompted by the publication of DSM-5, about whether or not mental illness is "really real".
The task of securing the etiology of mental illness is an important one, but it is not the case that the only "real" illnesses are those with biological causes. Those addicted to gambling are no less addicted than those addicted to heroin. Addiction is not simply a function of an individual's neurobiology but of their psychology, history and social environment. The emotional, affective, cultural and social dimensions cannot be eliminated from mental illnesses, even those illnesses thought to have a strong biological basis. This perspective is reinforced when we consider the fact that the ongoing success of any treatment is inseparable from the social realities within which individuals live.
This entanglement between the biological, psychological and sociological dimensions of human life is the basis for the field of biopolitics. Whilst this term is increasingly influential in a range of academic endeavors, it has only just begun to make serious cultural inroads. This is somewhat ironic as the basic insight of biopolitics is that academic and, in particular, scientific understandings of what it is to be human exert a deep influence on the ways in which we can understand ourselves and, therefore, on the nature of our existence as socio-cultural beings.
For example Foucault held that the existence of human sexuality was not so much discovered as invented. Initially homosexuality was conceived as a proto-psychiatric and pathological category but with it came its antonym. The concept of heterosexuality, the norm from which homosexuality deviates, was also brought into existence. The consequences have been enormous, not least in producing the idea that sexuality is a central aspect of not only humanity but also individual human beings and their identity. Recent discussion of asexuality only provides further support for this view.
In a relatively short historical time sex between people of the same gender has gone from sinful act, to a pathological sexuality, to one form of human sexuality. To recognise the role of psychiatry in the production and transformation of sexuality is to recognise the moral and political significance of the discipline and the knowledge it has to offer. We might then reflect on the moral and political significance of transforming the cultural problems of "overeating" and "grief" when we label them "binge-eating disorder" and "major depressive disorder" respectively.
We might also reflect on the current trend for neurological explanations of everything. Some bioethicists have recently argued for the utility of so-called "love drugs". These drugs are psychoactive compounds that may, one day, allow us to reinforce aspects of our romantic lives. They might allow us to support a foundering marriage or to weaken romantic feelings we no longer wish to have.
Aside from the dualism inherent in this picture, which suggests a distinction between our emotional attachments, feelings and desires and our logical and rational intentions and decision-making, such fictional social-scientific imaginings may themselves make important contributions to the possibility of their own success. The very fact of imagining ourselves to be beings whose emotional lives can be subjected to material and psychopharmacological control is an important factor in making the possibility a cultural reality. At minimum the existence of such drugs will radically alter the social morality of our romantic relationships.
There is an increasing recognition of the way in which science and scientific knowledge influences culture. This influence is noticeable precisely because we are not simply biological beings, and precisely because our biology cannot be separated from our culture. However we should be wary of replacing our cultural self-understanding with that offered by "the human sciences". When taken up as cultural self-understanding, the knowledge offered by science and, in particular, the psy-sciences must be considered as having political consequences and, indeed, as being inherently political in the first place.
Just as the idea of sexuality has made a deep contribution to the way in which we understand ourselves, both individually and collectively, the psy-, neuro and human sciences offer frameworks within which we can conceptualise and reconceptualise ourselves. They function to reorientate and reinterpret collective and individual problems of cultural concern. Thus when Nikolas Rose talks of "Inventing Our Selves" and Ian Hacking writes about "Making up people" or lectures on "Making up Autism" they are rejecting the idea that the science of human beings and of human being can tell us what is and is not "really real" precisely because they are implicated in the outcomes of their endeavors.
Where the natural sciences have objects – atoms, electromagnetic waves, molecules, cells and organisms – the science of human beings has subject-objects. Human beings conduct those sciences that take "human being" as the object of their attention. They are ways of understanding ourselves and, since we are reflexive beings, they cannot but impact upon us as the subjects of their investigation. This does not prevent the human sciences from being rigorous but it does alter the basis on which they are conducted; it alters the ethical and political orientation we ought to adopt towards the knowledge they produce.
We must be wary of uncritically accepting knowledge offered by the human, psy-, and neuro- sciences because, as amply demonstrated by the uses to which it is put by speculative bioethics and allied projects such as post- and trans- humanism, within it we find the power for a transformation of what it is to be human. The human sciences and, for that matter, bioethics are not ethically neutral and we should recognise that the knowledge they offer is part of the politics of life itself.
The other day I was very lucky to have a post published on 'Political Science' a new blog about science and politics hosted by the Guardian. The post is here and I have taken a .pdf copy of it here. There have been some nice comments and reactions to the post, which was very gratifying. Anyway, i thought I would archive an early version of the post here, so here it is:
If I asked you to imagine of an expert there is a fair chance that a scientist would spring to mind. She might be wearing a white coat, and might be a biomedical scientist or perhaps a medical doctor. Science and scientists have become equated with expertise, so much so it is often easy to forget that there are many other kinds of expert. For example some historians might be experts in particular times and places, whilst others might focus on particular individuals and be experts in their life, times and work. This latter focus might add an extra layer to their expertise. It is one thing to be an expert in the scientific work of Robert Boyle, say, and another to be an expert in the literary work of Shakespeare.
If we reflect on what we might call aesthetic expertise, the assumption that the expert is singularly authoritative comes under pressure. We might think that an interpretation of King Lear offered by Carol Chillington Rutter is an expert opinion on the matter, but it does not negate the opinions of generations of teenagers who discuss the book in classrooms every year. Neither do amateur productions negate the expertise of those who stage professional performances. In the light of such cases we might think aesthetic expertise to be a matter of being embedded in a particular culture and discourse and not simply a matter of knowing the correct answer.
Recognising the diversity of expertise can be helpful in reflecting on whether there can be any such thing as bioethical expertise. Whilst bioethics is an interdisciplinary field of academic endeavour, the idea of ethical analysis is one of its central projects. In this context the idea of bioethical expertise can look like a claim to moral authority. Bioethicists working in this domain attempt to offer definitive arguments and seek to answer particular moral concerns. For example, for many years now John Harris and Janet Radcliffe-Richards have both been arguing for the moral permissibility of a regulated market in transplantable human organs. Others, myself included, are of the opinion that such markets would be deeply problematic, morally speaking.
Whilst we might point to the academic debate and consider the participants to be experts in the field of bioethics, this does not negate the range of opinions and moral responses we might find across society as a whole or their political relevance. All things being equal, every human being can be considered a moral agent and, ultimately, their own moral authority. We might suggest that members of any given population have a kind of ubiquitous moral expertise. Such expertise allows them to negotiate the thick normative contexts of the culture(s) they live in. In this view, the idea of morality is broader than that of an ethical code and questions of right and wrong. It is more closely linked to ideas of character or ethos, terms that can be applied to societies and institutions as well as individuals.
This ubiquitous moral expertise is the ground on which expert bioethical expertise stands and is developed. Bioethicists often recognise the importance of remaining connected to our ‘common morality,’ and what they mean by this is not that bioethics should be consistent with generally accepted moral norms but that it should be comprehensible and responsive to ‘lay’ moral agents. Here it is instructive to consider the role of bioethics in relation to medical practice. If bioethics is to contribute to the moral dimension of medicine it must do so in a manner that is comprehensible to doctors as moral agents.
Such agency is deeply rooted in the cultural ethos of medicine and the character of the medical professional. What this means is that the bioethicist who hopes to make a concrete contribution to medical ethics must grasp the nature or moral culture of medical practice. They must develop what Collins and Evans have called interactive expertise. Such expertise enables individuals to ‘talk the talk’ of a particular discipline even if they cannot ‘walk the walk.’ In developing an interactive expertise with medical professionals, bioethicists develop a sense of the moral ethos of medical culture and so can better communicate their views.
Furthermore over the past thirty or forty years bioethics has become deeply embedded in medical culture, and we might think that some medical professionals have developed an interactive expertise with academic bioethics. They are not bioethical experts, at least insofar as they do not contribute to the discipline or academic literature. Nevertheless many make use of bioethical expertise, and medicine as a whole draws on this expertise to help it address the moral concerns that arise in practice. In this view, expert bioethicists and medical professionals collaborate to develop appropriate ethical guidelines that ethically shape clinical practices. Expert bioethics does not eliminate the moral authority of the individual professional or the profession as a whole, but it does seek to augment it. Ideally doctors should do the same in relation to their patients.
However, whether or not expert bioethics might be an illegitimate form of moral authority needs to be reconsidered in the context of the biosciences. Like medical professionals scientists work within a moral ethos, a normative structure we might call the scientific ethos. Their work does not, however, require the on-going exercise of moral agency, as is required in healthcare. Bioethical governance determines rather than shapes, answers rather than constructs, the moral questions raised by the biosciences.
In democratic societies even scientific expertise can seem problematic. The elevation of scientific truth or ‘evidence-based policy’ can imply a technocratic style of government at odds with our democratic ethos. On the face of it, the suggestion that there are expert bioethicists might appear to further these anti-democratic implications. Extending expertise from the realm of scientific facts to the realm of moral values reinforces the illusion of a technocratic utopia. However, to accept this illusion would be to forget that bioethics must maintain a connection to common morality, and that the opinions of bioethical experts do not obviate those of other moral agents.
In the case of medical ethics bioethical experts worked (and continue to work) with healthcare professions to respond to the moral and ethical questions raised by medical practice. In the case of the moral and ethical questions raised by bioscientific research, expert bioethics must find ways to work within the contemporary moral ethos. What this means is that bioethics must not only work with other experts and professionals, with bioscientists, politicians, policy-makers and interest groups, but also work democratically. Bioethics must engage with the public and, in doing so, become engaged by their concerns. It must become part of the drive to make science public.
Following an Independent Report from the Organ Donation Taskforce in 2008 the possibility of an opt-out Organ Donor Register (ODR) for the UK as a whole become remote. However the vagaries of devolution have allowed the Welsh government to resurrected the idea, if only for the population of Wales. As a general proposition I am against such a system believing it to be a step to far in allowing the state or ‘public’ interests to dominate the individual. However in the case of the current proposals being considered in Wales there are, I think, further concerns that means caution would be recommended. They can be divided into two distinct areas. The first are what we might call practical concerns of implementation and good governance. The second are concerns that suggest that, given the way posthumous organ donation is currently practiced, an opt-out ODR can no longer be considered symmetrical to an opt-in ODR. This indicates a pressing need to reform the current shape of the UK’s ODR.
In the first instance it appears the Welsh proposals will apply to all those who have been resident in Wales for 6 months or more. Presumably this means some official list of Welsh citizens will be used to form the basis of a specifically Welsh ODR and it will be updated every 6 months. Transplant professional will consult the list to ascertain if an individual has opted out. But this relies on them knowing whether an individual is a Welsh citizen. If they cannot find an individual on the list will they be presumed not to be a Welsh citizen? No further corroboration will be available, if they fail to appear on the UK ODR this may be because they simply do not wish to donate or have not, for whatever reason, registered. Only if an individual does appear on the list will healthcare professionals be able to assume an individual is a Welsh citizen and therefore an organ donor. However in this case a Welsh citizen is someone who has been registered as living in Wales for 6 months. Many current Welsh citizens are, I am sure, aware of the proposals, but are they all? And what of those who move to Wales after implementation, will they be made aware of the register and the fact they are automatically included? What of asylum seekers or other socially disenfranchised individuals. How will the Welsh government ensure these people are fully informed of their registration and right to refuse?
A short while ago I wrote a guest post of the BSA Med Soc Cost of Living blog on Why a pro-life Northern Ireland depends on a pro-choice UK. They invited me to update the post following the tragic death of Savita Halappanavar. Here is what I had to say:
The tragic case of Savita Halappanavar does not precisely reflect the concerns expressed above. But it does illustrate something about the consequences of reducing debates about abortion to simplistic moral arguments that stifle legitimate debate. It seems evident that even in a country with restrictive abortion legislation that women whose pregnancy places their life at severe risk should receive lifesaving treatment. In this respect the tragic events in Galway make it difficult to come to any other conclusion than that Savita Halappanavar’s care was, at best, mismanaged. Two investigations have now been launched to find out where things went wrong.
However that this tragic event occurred is not simply a matter of legislative or professional incompetence but a broader political failure of those in positions of power – whether they are legislators, professionals or clergy. Only last year, a group of Irish medical professionals declared that ‘abortion was not medically necessary to save the life of a pregnant mother.’ In the light of this comment on the clinical parameters of Savita Halappanavar’s case this is a bizarre statement from trained medical professionals. It is evident that both North and South of the border clinicians need further guidance. The intransigence of the powerful belies the increasingly organized grassroots pressure on the Irish and Northern Irish governments to tackle the issue of abortion legislation. Their continued failure to do so maintains the status quo where women travel to other countries to get the services they need whilst moralist rhetoric monopolises public, political and professional discourse.
The power of these moralists extends, it seems, all the way to the clinic where it needlessly cost Savita Halappanavar’s her life. This state of affairs cannot continue. Both political and professional actors need to accept their responsibility to create proper legislation and clinical guidelines for abortion before any more women die needlessly.