Bioethical Expertise: A 'Early-Version' Cross-posting from the Guardian
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.
Should Wales Opt-out of Opt-out Organ Donor Register?
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[1] 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 Brief Note on the Death of Savita Halappanavar
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.
A Word Cloud of My Entire Zotero Library
My favourite reference manager is the marvellous Zotero and I recently discovered the Paper Machines add on. This extension analyses and adds to the data in your library and allows you to make new connections and see interesting links. Ot it might once I get to grips with it! At the moment I can produce a 'wordle' like visualisation, like this:
This is based on the ridiculous number of citations I have in my entire library (just north of 10,000) including all the .pdfs I have attached. I don't think there is any surprises here, except it is a bit odd that the word 'education' appears to be missing. Still, here is another, based on the same data.
Quality, Quality of Care, and Ethics: Some Notes.
‘Quality’ is a curiously amorphous word that has, nevertheless, become a major policy driver, particularly in regards healthcare where we find a ubiquitous concern for the ‘quality of care.’ Akin to ‘choice,’ quality is held to be a self-evident good yet, at the same time, as there is little that is not in fact ‘a quality’ and the word offers very little specification. In fact its significance lies not in naming any particular quality or qualities of (health)care but in suggesting first, that there are some aspects, properties or qualities of healthcare that are good (whilst others are not so good or downright bad) and second, that those qualities that are good can be improved. This being the case then the idea of the quality of care must be unpacked and its specific meanings explored. Obviously ‘quality of care’ might mean different things in different contexts and to different people – particularly to professionals and patients. Obviously the care required and, therefore, the qualities that constitute such care differs in A&E, primary care, care of the elderly in a hospital setting compared to a community setting may well be differ in specific instances of care. The specifics of ‘care’ and the particular qualities on which its overall quality are to be judged can be variable. Given a particular case a clinical team might foreground particular aspects, the management some other (measurable) aspects, the patient some other aspects, and the patients family still others.
Why a Pro-life Northern Ireland Depends on a Pro-choice UK
Following my previous post I wrote a shorter, more focused piece, for the medical sociology blog 'Cost of Living.' I reproduce it here:
Over the past couple of weeks or so the abortion debate has once again flared into life. Newly appointed Secretary of State for Health Jeremy Hunt announced his support for halving the legal limit on abortions to 12 weeks. Then, last week, the journalist and political commentator Mehdi Hasan published a piece claiming that ‘Being Pro-Life Doesn’t Make Me Any Less of a Lefty’ prompting many to spend the next few days demonstrating that actually ‘Yes, Being Pro-Life Does Make You Less of a Lefty.’ This week the British Pregnancy Advisory Service (BPAS) launched a campaign titled ‘No More Names’, aimed at reducing the stigma and indeed harassment that many women experience around abortion.
Clearly, abortion is an issue that commands widespread social, and political comment. But it is not simply an issue of pro-choice verses pro-life or left versus right. For example, it is commonly assumed that the UK’s 1967 Abortion Act was the result of the nascent feminist movement. Certainly some feminist campaigners were involved but not all feminists, then or now, agree with abortion. The act resulted from the work of a diverse range of individuals and groups whose interests and concerns generated a complex and sometimes conflicting set of aims and objectives. This included many individuals and organizations that were morally opposed to abortion but could no longer ignore the consequences of prohibition: unsafe backstreet abortions. 45 years later the issues remain just as complex.
In the midst of these debates comes an announcement from Marie Stopes that it will be opening a clinic in Belfast offering termination of pregnancies of up to 9 weeks gestation*. This is a landmark event given the political, social and religious context of Northern Ireland and it is one that merits further consideration. The majority of women living in Northern Ireland who want a termination have to access abortion services elsewhere in the UK and, in some cases, elsewhere in Europe. The associated financial as well as emotional and physical costs involved in seeking an abortion in England, Scotland, Wales and beyond has a direct impact on determining who can (and who cannot) pursue this course of action. Thus, for Northern Irish women abortion appears to be an economic privilege, rather than the political right it is for women in other parts of the UK. The opening of the Marie Stopes Clinic might go some way to redressing this inequality, (but this does not mean that the clinic is being welcomed with open arms).
In this context, the costs associated with seeking a termination are of paramount importance. The NHS does not provide for those who travel from Northern Ireland for a termination and so the women (who are UK citizens) must pay for private treatment. On top of this there is the cost of travel, overnight accommodation, possibly time off work and perhaps childcare – the total bill can easily be upward of £1,000. Many cannot afford this and it is in this context that we see stories of women buying abortificant drugs through online providers as a cheaper alternative to visiting a UK clinic.
The specifics of the Northern Irish situation create a number of paradoxes. Those in Northern Ireland who advocate for the continued restriction of abortion are able to maintain this position precisely because they do not have to fully face the consequences of this position. In the pro-life/pro-choice debate the issue of unregulated abortions does not have a significant bearing, precisely because women can pay to travel elsewhere for a termination. The paradox is that whilst access to abortion is officially severely restricted, in practice, it is widely available to those who can afford it. Northern Ireland’s particular religious characteristics are, of course, also important in this debate. Religious observance is widespread and many of the local politicians are self-avowed Christians, of various denominations, with most parties being avowedly anti-abortion. Nevertheless Northern Irish politicians are charged with representing the views of all their citizens and there is a great diversity of opinion. The current political situation is failing to meet the needs of those women who travel to access abortion services and it is disenfranchising those who cannot afford to do so. The opening of the Marie Stopes Clinic in Belfast provides a legal service some women clearly wish to access, whilst also challenging the Northern Irish government to clarify the legal position on abortion. Whilst the Marie Stopes clinic does not remove all the financial barriers to abortion, it brings the issue of abortion provision in Northern Ireland to wider attention in an unprecedented way. This can only serve to move the social and political debate forward, and for this it is to be welcomed.
About the author: Nathan Emmerich is a Visiting Research Fellow in the School of Politics, International Studies and Philosophy, Queen’s University Belfast. He tweets from @bioethicsuk.
* The legal position on abortion in Northern Ireland remains unclear and there have been demands for the devolved government to clarify the issue for some time. In 2004 the Family Planning Association NI (FPANI) successfully challenged the Northern Irish Department of Health and Social Services’ refusal to issue guidelines on abortion. These finally emerged in 2009 [.pdf] but, on the basis of their provisions for conscientious objection and counselling, they were successfully challenged by a group of pro-life organisations. No further guidelines have been issued since although the Family Planning Association of Northern Ireland have recently been awarded a further legal hearing now scheduled for Jan 2013.
Abortion and its Governance: A Comment on Northern Ireland
In 1986 a group from the Royal Society of Medicine attended a conference in New York billed as: ‘Biomedical Ethics: Anglo-American dialogue.’ Despite the fact that there was clearly a sense in which the British had come to learn the new ‘bioethics’ from its American progenitors The Reverend Professor G.R. Dunstan discussed the strong tradition of ethical reflection found in the UK medical profession in his opening address. Indeed he claimed that with regard to "the involvement of churchmen and philosophers in medical ethics, we in the United Kingdom were about ten years ahead of you in the United States" (1988:5). For support, he draws on the work of the Church of England’s Moral Welfare Council and “its pioneering work on the ethics of sexual relationships in general to specific questions of contraception, sterilisation and abortion in particular, and thence into the prolongation of life and of dying” (1988:6).
It is easy to forget the fact that the Church of England played a positive role in much of the progressive legislation of the 1960s, perhaps most notably in the formation of the 1967 Abortion Act. There is little doubt that some of those involved with the development of the Act thought abortion was, at minimum, ethically questionable. However it was clear that the consequences of criminalisation – primarily backstreet abortions but also women having to continue with pregnancies that put their health at risk – were a sufficiently great moral concern that could no longer be ignored. Certainly the CoE (and, for that matter, the BMA) also had a conservative effect that can still be discerned in the fact that two doctors are required to certify the grounds for an abortion before it can take place. At the time this restriction on a woman’s ‘right to choose’ was sufficient for some feminist campaigners to become disillusioned with the development of the bill and to disengage from the process.
Circumcision, Genital Alteration and Ear Piercing
The debate regarding infant male circumcision kicked-off once again last week as the American Academy of Paediatrics issued a policy statement suggesting that circumcision had minimal, but nevertheless real, health benefits and that, therefore, they would not oppose the practice. Writing on the Oxford Practical Ethics Blog Brian Earp tackled the claims and such was the weight of interest the traffic it attracted apparently crashed the servers. Catarina Dutilh Novaes noted Earp’s post on the NewApps blog and, titling her brief post Circumcision, aka male genital mutilation, sparked a debate over whether male circumcision was comparable to female circumcision AKA female genital mutilation. Well, I say she sparked it but I think Brian Leiter can be credited with blowing that spark into life!
In a previous post I suggested that male and female circumcision are not exactly comparable and I still think so. Following her post and the ensuing debate Novaes, however, has come to the opposite conclusion. She now frames her discussion in terms of ‘genital alteration’ and ‘genital cutting.’ Her argument runs along the following lines: Both male and female circumcision have been used to ‘control’ male and female sexuality and both men and women who have been circumcised variously think they both have and have not lost any sexual function or sensation they cannot be distinguished on these grounds.[1] Agreeing with Earp that male circumcision has no clear health benefits she concludes: “it remains difficult to maintain coherently that male genital alteration is acceptable while female genital alteration is not.”
The UK's Emerging Science and Bioethics Advisory Committee: Who Knew?
The other day, on the Twitters, I was following an exchange between Duncan Wilson (University of Manchester, twitter) and Adam Hedgecoe (Cardiff University, twitter, academia.edu) [1] and learned that the UK now has a ‘Emerging Science and Bioethics Advisory Committee’ (ESBAC). At first I was somewhat embarrassed that I had not heard about it before but after a quick Google I stopped beating myself up as it appears that there has not been much discussion of it. Certainly little has appeared in the news and although there has been a bit more talk online, it doesn’t actually amount to much.
The committee now has a chair (Professor Sir Alasdair Breckenridge) and the members have been appointed. After a quick look through the list, and a little more googling, it seems there are a lot of scientists, a few lawyers, some industry representatives and four people I could identify as ‘bioethicists’ (the term is, one might say, 'contested'. Some other committee members could well be classed as bioethicists and, arguable, all the members of the committee are de facto bioethicists by virtue of that fact).
Live as you wish, but the collective civil partnership is unlikely to become a reality
In my last post I argued that the debate over gay marriage could be resolved if the government abandoned all legislation concerning marriage and restricted itself to the gender neutral ‘civil partnership.’ Since I wrote it the Catholic Church in Scotland went on the offensive and, to my mind, simply confirmed that a secular government should not involve itself with the definition of marriage. Arbitrating moral disputes regarding what is and is not 'marriage' is not the business of the state. If we simply legislated for gender-neutral civil partnerships people could then make use of this framework in whatever way they saw fit.
Of course, homophobic religions would continue to discriminate on the basis of gender and sexuality (and thereby be exposed for what they are) whilst more ‘progressive’ religions would continue on the path some of them are already on and others have largely concluded. Those who arranged their weddings in locations outside of religious settings would be able to conduct their ceremonies precisely as they pleased. As opposed to the current ridiculous state of affairs where such things are banned they would be able to sing hymns or having particular readings that make mention of god or any other religious theme. Our cultural histories belong to all of us and should not be the protected property of one aspect of contemporary society only to be used as they see fit.
Why, weirdly, I am against Gay Marriage
For some time I have been trying to find a succinct way to express the reasons why I am against gay marriage. I have found it quite difficult to present my views in a focused manner, no doubt because there would seem to be no particular reason for me to be opposed to gay marriage. Certainly I do not think that homosexuality is in any way wrong or bad and I also think that the state should accord homosexual couples the same rights as heterosexual couples. But therein lies the rub. Simply put I think the state should get out of the business of regulating ‘marriage’ per se and restrict its legislative remit to ‘civil partnerships.’ There are two motivations for this. The first is the way in which I perceive the emancipatory developments that attend the sexual revolution, feminism and the secularization of society. This latter informs the way in which I think society ought to respect religion and religious freedom, particularly when we disagree with it, whilst, at the same time, not being wholly subservient to its claims. In this post I try to articulate my view.
You Can Have My Organs, If My Family Agree.
Once again the rather ugly side of those who seek to increase the supply of organs has appeared in the news. In an article published by the BMJ in its ‘personal view’ section yesterday Dr Shaw has argued “we should not let families stop organ donation from their dead relatives” (subscription required). He points out that whilst there is no legal mandate on which families can refuse to donate the organs of a recently deceased loved one who has signed up to the organ donor register it is nevertheless the case that doctors do respect the wishes of families who are adamantly opposed to donation. The amounts to around 1 in 10 potential organ donors many, but not all, of which would have gone on to donate and, therefore, save – or at least improve - the lives of others. The story was carried by the Today program, the World at One, and various newspapers across the UK and America and in the medical press.
The trouble with this perspective is that it fails to fully realise the conditional nature of donation. I am a register organ donor but that doesn’t mean I am happy to donate my organs in any and all circumstances. For a start I am only happy to donate when I am dead (or as good as). If, for example, I was in a position where I could donate my organs but there was a particular treatment that had a very low probability of saving my life but, if it failed, would rule out any possibility of donation, I want that treatment. Furthermore, whilst my family are aware of my views (and I theirs), if, when it came to it, they found themselves adamantly opposed to donation then I do not want to donate my organs. I'll say that again: if, on my death, my family found themselves so upset (and I hope they would be at least somewhat upset) that they did not want my organs to be donated then I want – my wish is that - my doctors should respect their wishes. In fact I am not sure that any organ donor would wish to donate in curcumstances that caused great further distress to their families.
NHSBT Organ Donation Survey: A Critical Note
This weekend the Guardian reported that the NHS Blood and Transplant service is surveying opinions on how the supply of transplantable organs might be increased. Alongside the survey they have a portfolio of evidence (.pdf).
Whilst I encourage everyone who wants to complete the survey to do so I have a few criticisms. The first thing is that the survey asks you to classify yourself by checking a box. Most of the options are for some sort of professional (clinical and non-clinical) but the first option is 'member of the public' and, seprately, there is the item 'patient'. Also included is '(family of an) organ donor,' '(family of an) organ recipient,' 'someone on the Transplantation list'. I am not sure if the survey is really aimed at 'the general public' but the 79 page portfolio of evidence that one is supposed need to read before completing the survey is not exactly conducive to their participation.
Furthermore it is not overly clear that the evidence offered really informs the questions being asked. Competently answering the first question, 'How do we get the best results for those listed for a transplant?,' is reliant on the respondents own expertise. The surveys requires responses to be ranked and subsequent questions, like 'How do we maximise use of every offered organ, and thereby maximise the gift of donation?,' require some knowledge of how the organ transplantation infrastructure is currently organised. Similarly for 'How do we ensure that everyone with the potential to donate is given that opportunity at the time of their death?'
(Bio)Ethics, Male Circumcision & Religious Practice.
A few weeks ago a German court ruled that male circumcision constituted bodily harm and should be banned. Since then the debate has rumbled on, both in bioethical forums and in public discourse. Today saw posts from Iain Brassington, on the JME blog, and Giles Fraser, on the Guardian’s Comment is Free. Brian D. Earp has been particularly active, first, in his post for Oxford’s Practical ethics blog and, subsequently, on his twitter feed. I am less interested in the specifics of the circumcision debate because, as I see it, it is merely a distracting microcosm of our broader anthropological understanding of religion, religious practices and the nature of raising children.
One aspect of the German court’s ruling is that circumcision is, somehow, tantamount to allowing individuals other than the child to determine his religion and, therefore, denies the child the right to choose their own religion. We could note, as John Gray recently argued, that construing religion as a kind of existential choosing; as the selection of one metaphysics amongst many - as if theological commitments were, merely, a form of modernist enlightenment philosophy – radically misunderstands the nature of its history and practice, as well as the nature of theology and theological debate. Furthermore, as a cultural institution, no religion is a unitary phenomenon. We might also note that, even if the issue at stakes was making a fully informed rational choice, the child does not have the ability to make such a choice and so, at best, this perspective is predicated on the idea that the child has the potential to make such a choice in future. I don’t think I need point out what such commentators think of potentiality arguments in other contexts.
Top Tips for (UK) PhD Students
Last week I gave a talk at the 6th Postgraduate conference in Bioethics supported by the Wellcome Trust, the Institute of Medical Ethics, and PEALS at Newcastle University. The conference consisted of 4 ‘keynote’ talks by established academics (who then held masterclasses), a good number of postgraduate presentations spread across 7 or so panels and a couple of ‘added value’ sessions. I was one of these latter presenters and I attempted to give a bunch of ‘top tips’ of things to do whilst studying for a PhD in the UK. Hopefully at least some of these translate across national and subject/ discipline boundaries. My talk was aimed at UK students studying for a PhD in ‘bioethics’ and I have reproduced the main points below:
1. Visit a Library to Do Some Intensive Research:
In my actual talk I mostly focused on the resources of the Wellcome Trust Library and pointed out some useful features of the surrounding area (the UCL SU cafe, directly behind the Wellcome Collection, and excellent for cheap coffee and lunch; the excellent second hand/ cheap academic book store Judd Books; and the Bloomsbury Waterstones). However if you get a chance to spend some time, even a few days or a week, at a different library during your PhD it is worth doing. I twice spent dedicated time in the Wellcome Library and the Royal Society of Medicine Library. I also spent a few days in Georgetown’s Kennedy Institute of Ethics bioethics research library in my first year. With all the research resources the internet provides for modern academic research it may not be that you will find anything new but it is definitely worth hiding away for an intensive period of focused reading, writing and ‘research’. One thing I forgot to mention during my actual talk is that institutions (often American institutions) offer unpaid visiting research fellowships to PhD students. It seems to me that there is not a strong tradition of UK PhD students doing this, or knowing about the possibility. However it seems to be a common thing across Europe and worth checking out. If you can plan a trip properly you home university may offer travel scholarships and other forms of support.
Organ Donation: Now there is an App for that!
A mere week after I blogged about the potential for social media to encourage people to register their views about organ donation facebook and the UK/USA blood and organ donation services team up to do exactly this! What they have produced is not exactly an ‘app’ but a Facebook page (UK version, USA version) for each service facilitating individuals in signing up to their countries’ donation register. In the new timeline profiles you can also make registering to donate a ‘life event’ under the health and well being tab (Facebook help page).
(Incidentally other health and wellbeing life events formally recognized by Facebook include: overcoming, but not contracting, an illness; quitting a presumably negative habit (smoking, drugs, alcohol) although not taking up a positive one (running, seeing a psychoanalyst); losing, but not gaining, weight; a change eating habits - presumably from omnivorous to vegetarian or vegan; getting glasses or contacts; and breaking bones. A somewhat strange list).
Organ Donation: Why isn’t there an App for that?
For one reason and another I have spent the weekend thinking about some of the issues involved in organ donation. I have a pretty simple position. Donating your organs is a good thing and people should do it. I’d support an opt-out system of registration as long as there was plenty of opportunity for people to express their (possibly changing) opinion on the subject. I think I would also support a system of mandated choice where the choices available include ‘I don’t know.’ In the eventuality of death this would mean ‘ask my family’ but the point is that under mandated choice (or, rather mandated registration) it should be fine for people to be undecided. Indeed I think that under any system you should be able to register a ‘no’ or a ‘don’t know,’ information that could be useful to a family when consulted about the possibility of a deceased or dying relative becoming a donor. This is not something that is currently possible and is something the Nuffield Council on Bioethics recently recommended.
On Evans' Rather Odd View of Bioethics as a Profession & Bioethicists as Professionals
I recently read John H. Evans’ new book, The History and Future of Bioethics: A Sociological View. On the face of it, this should have been very much my sort of thing. However, I am afraid to say I did not get on with it very well at all [1]. With the (very) honorable exceptions of his ideas regarding (bio)ethical translation, transmutation and, particularly commensuration, I am not sure there is much in it worth taking away. I think this is largely down to the way Evans understand bioethics as a profession and bioethicists as professionals. Of course this is, in turn, down to the fact that he is researching American bioethics. In the USA there are hospital based consultant bioethicists who, it appears, very much look and act like professionals. This gives the claim that bioethicists are professionals a stronger basis than in the UK, where there are no such ‘consultants’.
Given that bioethics is a global enterprise and the fact that there is no equivalent to the American ‘consultant bioethicists’ in the UK and elsewhere and we might question whether the fact that there are such things as hospital based ‘professional’ bioethicists should lead us to conclude that bioethicists and bioethics sui generis constitute a profession and, furthermore, if they are members of the same profession as the consulting bioethicist. For example consider the priest and the academic theologian. The priest is, certainly, a professional and a member of a profession, properly understood. However the academic theologian is not necessarily a member of that profession even if they are of the same religion. We might think the academic theologian is a professional, but this would be to distinguish her from an amateur theologian rather than to suggest that she belongs to a guild. At the very least Evans’ contention that bioethics is a profession needs further support.
Beyond Personhood as Moral Status
The latest bioethical event of the on-going culture wars originates, somewhat unusually, in the UK, at least in so far as the Journal of Medical Ethics is a UK organ. The JME has in the past week published an article entitled “After-birth abortion: why should the baby live?” The author’s choice of term for the action they seek to consider is at best distasteful, at worst pointlessly misleading and obviously provocative. Seeking to describe the killing of newborn infants as ‘abortions’ is about as helpful as those who describe abortions as the murder of innocents or, in broader terms, as a genocide. Frankly at a time when a woman’s right to abortion services is being challenged across America and the UK the authors should question the ethics of using this terminology.
Clearly this is an article designed to attract attention and, I think, one can question the sincerity with which it is offered on that basis alone. One could also question the motives of the JME in publishing it; certainly, as everyone has acknowledged, the article is not particularly original. This charge is, however, mitigated by the fact the handling editor was Rev Prof Ken Boyd (who offers his perspective here) someone who is obviously opposed to the point of view presented and is, in my view, unlikely to have approved the piece for the publicity alone. As the Editor in Chief of the JME Prof Savulescu defends his position here and further concerns over the controversy appear on the Guardian’s Comment is Free (another CiF point of view is here). I am in agreement that the intemperance of the response (understatement alert) exhibits a greater immorality than the article itself but equally no one should be surprised that it provoked such a response.
The Professional is Political
Yesterday it was reported that [more] that Prof John Ashton, a county medical officer for Cumbria, had been called by his Primary Care Trust (PCT) to attend a hearing. This had, apparently, been arranged to consider if he had broken the NHS code of conduct by appending his signature to an letter criticising Lansley's proposed NHS reforms. It seems that someone thinks that having a political opinion is not a privilege NHS employees enjoy and it started off another round of #iamspartacus on the twitters.
However, in the News and Star, a local Cumbrian newspaper, Prof Ashton is quoted as saying:
[Prof Ashton] stressed it was his professional – not personal or political opinion – that the reforms will cause irreversible long-term damage to the health service.
I am not sure what it is that makes Prof Ashton's opinion on these matters in some way a 'professional' one, as distinct from a personal or a political one. Indeed I don't think a professional opinion on these reform either needs or can be differentiated from a personal opinion and it certainly cannot be said to be apolitical. However I do not think there is any need for Prof Ashton to deny his professional opinion on NHS reform is in no way related to his personal or political opinion. They cannot and should not be separated. Certainly when he is speaking in a professional-political capacity then his 'mode of expression' might be somewhat different to when he is speaking in a purely personal-political capacity but professionals cannot, in some way, be deemed or demanded to be apolitical.
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