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IAB 2016: Graeme Didn’t Say “None”…

21 Jun, 16 | by Iain Brassington

Every two years, I write a little post-mortem of the IAB conference, mentioning particular high and low points.  But since I’ve heard near-blanket praise for this year’s Edinburgh fandango, there won’t be too many of the latter.  And everyone with whom I’ve been in contact since has been highly impressed; we’re all still on a bit of a high.

So what was particularly good?  Well, in general, I thought that the standard of argument in most of the papers was high: it’s nice to see really big ideas being grappled with.  Matthias Risse’s paper on IP, particularly in the context of making drugs available to the least well-off, was the keynote on Thursday morning, and was notable in this regard.  Risse was arguing that the current IP regime owes too much to Locke, and not enough to Grotius.  In other words, he made no bones about an appeal to 17th-century political philosophy.  A simple and undemanding rehearsal of principlism this was not.  I’d perhaps have liked to hear more about rights to the medicines in question, as a complement to the point about IP rights – after all, unless there’s a right to the medicines, many of the arguments about IP may be moot; but I’m sure that is, or at least could be, done elsewhere.

Similarly, Gillian Brock’s paper about the medical brain-drain left a few questions unanswered – the proposal that there be some kind of mandatory service for professionals from low-to-middle-income countries arguably places a burden on some people for the misfortune of not having been born in a wealthy part of the world, and leaves open questions about what the point of eduction is to begin with (national needs or personal flourishing?) – but was very good all the same.  I missed Catherine Belling’s “Going Under and Coming Round”, but everyone to whom I spoke was mightily impressed – Stephen Latham seemed genuinely lost for words about how good it was; and I also missed Alondra Nelson’s keynote on the social life of DNA, which seems also to have been warmly received.

Of the parallel sessions, one that particularly stands out is Tamara Kayali Browne’s paper on sex-selection; there’s a different-but-related paper by her currently available as a preview in the JME.

On the Arts and Bioethics theme, Adura Onashile’s HeLa was a thoughtful take on a familiar story, and generated a really interesting Q&A; Vishal Shah’s Vellum was a strange and wonderful thing.

The Early Career Researcher emphasis seems to have been a great success, too.

So were there any down points?

  • Well, there were fewer parallel sessions than there have been in previous iterations of the conference (or at least, so it felt); and that did give the thing a slightly different dynamic.  However, I can’t put my finger on exactly what the difference was, qualitatively speaking; and the fact that there’s a difference doesn’t mean that things should have been done otherwise.  With a lot of people having been offered posters rather than oral sessions (one of my submissions being among them), I think that it’s simply a different way of going about things, and I suspect that any quibbles will boil down to taste.  I don’t think that there’re real grounds for complaint.
  • I was a little saddened that I didn’t get to play my normal game of spot-the-bizarre-paper-that-somehow-got-accepted-with-hilarious-consequences, because there was no bizarre paper, as far as I could see.  (Hmmm.  Maybe that means that my symposium paper was the bizarre one.  Eeeep.)  So that’s a minor disappointment, I guess.  But being denied the opportunity of a good facepalm in the pub afterwards isn’t all that much of a hardship.
  • At the ceilidh, a frightening number of people seemed to be unable to count to eight.
  • I was in Edinburgh a fortnight ago, and it was gloriously sunny and warm.  During the IAB, it was cold and wet.  The word “dreich” shouldn’t be usable in June, but it was this time.  Yet it’d hardly be fair to complain about the IAB on that basis.  Besides, nasty weather reduces the incentive to skive and go for a walk up Arthur’s Seat.  Besides besides… it would have been a shame to miss any of the conference.  So who cares about the rain?

Which is as much as to say: no down points really.  Well – except for that one paper talking about assisted dying that relied on a picture of a child next to a headstone where an argument should have been.  You know who you are.

That aside, though, it was all preternaturally good stuff.

After the closing ceremony, I asked Graeme Laurie how many virgins he’d had to sacrifice in order to make sure that things went as well as they did.  He did not say “none”.  Make of that what you will.

There’s Argument, and there’s Disputation.

7 Jun, 16 | by Iain Brassington

Very well, then: let’s allow that the quality of argument in bioethics – and clinical ethics in particular – is not of high quality.  What should be done about it?

That’s a hard question, though it’s predictable and wholly justifiable that it should be asked.  And, to be honest, I don’t know offhand.  I might have a few germs of ideas, but nothing that I’d be prepared to mention in public.  That doesn’t mean that I can’t look at other ideas, and test them out.  One such idea is mooted in this paper by Merrick et al: in essence, they propose a sort of debating competition.  They begin by explaining – with some plausibility – some of the factors that make it a bit hard to get full-blooded engagement with ethics in the medical curriculum:

As educators, we have observed additional challenges medical students face in their ethics education, which echo others’ experiences. First, because of the prodigious amount of information medical students are presented with during their first two years of training, they typically adopt a strategy of selectively reading assignments, attending large lectures, and participating in small group discussions.  In this context, ethics appears to be deprioritized, because, from the students’ perspective, it is both more demanding and less rewarding than other subjects.  Unlike other subjects, ethics requires students to reflect on their personal moral sensibilities in addition to understanding theory and becoming familiar with key topics and cases.  Yet, also unlike other courses, poor marks in ethics rarely cause academic failure, given the way performance in medical school curricula is typically evaluated.  Thus, ethics is both more demanding—because of the burdens of self-reflection—and less rewarding—because excellence in ethics does not contribute significantly to grades or test scores.

Second, medical students face challenges in how they individually conceptualize the value of ethics in the medical context.  Although many indicate that morality is important to them, they also suggest that it is a subject matter that relates to their personal, as opposed to professional, actions.  Instead, students often conflate the domains of institutional policy and health law (especially risk management and malpractice litigation) with medical ethics.  Although these domains are obviously also of essential concern for future physicians, they remain distinguishable from ethical issues likely to emerge in practice.  Consequently, rigorous and effective ethics education within the medical school context faces the challenge of distinguishing ethics from other aspects of professionalism.

Too often, ethics gets run alongside communication skills training (well, it’s all about getting informed consent, isn’t it?  Eh?  Eh?); and I’ve lost count of the number of times I’ve been asked to prepare multiple choice questions for ethics assessment.  (Standard answer: nope.  It’s got to be an essay of some sort, or it’s not worth doing.)

So what to do?  The paper, as I’ve already said, suggests a quasi-competitive debating competition, in which teams of students are given a problem, and a limited time to make a case in response to that problem.  An opposing team then has a limited amount of time to place a counterargument.  Then they swap roles, so the counterarguing team gets to make the argument, and the previous arguers now become counter-arguers.  Judges can ask questions, and assign a score.  “The basic aim of the MEB curriculum,” the authors say,

is to help students learn how to produce and present an argument for an ethical position in response to a realistic clinical situation.

Hmmmmm.

Every now and again I get asked to help judge debating competitions – sometimes for academic institutions, sometimes for non-University bodies, sometimes for others (*cough* Instituteofideas *cough*).  I used to be happy to help out.  But I’m not so sure now. more…

Writers Whose Expertise is Deplorably Low

4 Jun, 16 | by Iain Brassington

Something popped up on my twitter feed the other day: this document from Oxford’s philosophy department.  (I’m not sure quite what it is.  Brochure?  In-house magazine?  Dunno.  It doesn’t really matter, though.)  In it, there’s a striking passage from Jeff McMahan’s piece on practical ethics:

Even though what is variously referred to as ‘practical ethics’ or ‘applied ethics’ is now universally recognized as a legitimate area of philosophy, it is still regarded by some philosophers as a ghetto within the broader 
area of moral philosophy.  This view is in one way warranted, as there is much work in such sub-domains of practical ethics as bioethics and business ethics that is done by writers whose expertise is in medicine, health policy, business, or some area other than moral philosophy, and whose standards of rigour in moral argument
are deplorably low.  These writers also tend
 to have only a superficial understanding of normative ethics.  Yet reasoning in practical ethics cannot be competently done without sustained engagement with theoretical issues
in normative ethics.  Indeed, Derek Parfit believes that normative and practical ethics are so closely interconnected that it is potentially misleading even to distinguish between them.  In his view, the only significant distinction is between ethics and metaethics, and even that distinction is not sharp.  [emphasis mine]

It’s a common complaint among medical ethicists who come from a philosophical background that non-philosophers are (a) not as good at philosophy, (b) doing medical ethics wrong, (c) taking over.  All right: there’s an element of hyperbole in my description of that complaint, but the general picture is probably recognisable.  And I don’t doubt that there’ll be philosophers grumbling along those lines at the IAB in Edinburgh in a couple of weeks.  There’s a good chance that I’ll be among them.

There’s a lot going on in McMahan’s piece, and his basic claim is, I suppose, open to a claim that, being a philosopher, he would say that, wouldn’t he?  But even if that claim is warranted, it doesn’t follow that it’s false.  And it probably isn’t false.  There is some very low-quality argument throughout bioethics (and, from what I remember from my time teaching it, business ethics) – more particularly, in the medical ethics branch of bioethics, and more particularly still, in the clinical ethics sub-branch.  Obviously, I’m not going to pick out any examples here, but many of us could point to papers that have been simply not very good, because the standard of philosophy was low, without too much difficulty.  Often, these are papers we’ve peer-reviewed, and that haven’t seen the light of day.  But sometimes they do get published, and sometimes they get given at conferences.  I’ve known people who make a point of trying to find the worst papers on offer at a given conference, just for the devilry.

It doesn’t take too much work to come up with the common problems: a tendency to leap to normative conclusions based on the findings of surveys, or empirical or sociological work; value-laden language allowing conclusions to be smuggled into the premises of arguments; appeals to vague and – at best – contentious terms like dignity or professionalism; appeals to nostrums about informed consent; cultural difference used as an ill-fitting mask for special pleading; moral theories being chosen according to whether they generate the desired conclusion; and so on.  Within our field, my guess is that appeals to professional or legal guidelines as the solutions to moral problems is a common fallacy.  Not so long ago, Julian noted that

[t]he moralists appear to be winning.  They slavishly appeal to codes, such as the Declaration of Helsinki.  Such documents are useful and represent the distillation of the views of reasonable people.  Still, they do not represent the final word and in many cases are philosophically naïve.

Bluntly: yes, the WMA or the BMA or the law or whatever might say that you ought to do x; and that gives a reason to to x inasmuch as that one has a reason to obey the law and so on.  But it’s unlikely that it’s a sufficient reason; it remains open to us always to ask what those institutions should say.  Suppose they changed their minds and insisted tomorrow that we should do the opposite of x: would we just shrug and get on with the business of undoing what we did today?

And yet…  The complaint about poor argument is not straightforward, for a couple of reasons. more…

Special “Editor’s Choice” Issue of the Journal of Medical Ethics Now Online

28 May, 16 | by bearp

by Brian D. Earp / (@briandavidearp)

On behalf of the Journal of Medical Ethics, I am excited to announce the publication of a special “Editor’s Choice” issue, now online at the journal website. In a rare turn for the journal, the entire issue made up of “Editor’s Choice” papers, with invited (peer-reviewed) papers from both up-and-coming and established scholars.

Editor-in-Chief Professor Julian Savulescu explains the significance of the issue: “Our self-imposed brief was to concentrate on excellent but less well-known scholars from a variety of perspectives, especially those who are young and up and coming, alongside some more established contributors.”

Although no particular topic assignment was given, Professor Savulescu remarks that “it is interesting that [the] contributions aggregate naturally around four perennial clusters: the concept of the good life, end of life, public health and new technologies (enhancement/selection).”

Here are some highlights from each contribution to the issue: more…

Enhancement as Nothing More than Advantageous Bodily and Mental States

20 May, 16 | by BMJ

Guest Post by Hazem Zohny

Some bodily and mental states are advantageous: a strong immune system, a sharp mind, strength.  These are advantageous precisely because, in most contexts, they are likely to increase your chances of leading a good life.  In contrast, disadvantageous states – e.g. the loss of a limb, a sense, or the ability to recall things – are likely to diminish those chances.

One way to think about enhancement and disability is in such welfarist terms.  A disability is no more than a disadvantageous bodily or mental state, while to undergo an enhancement is to change that state into a more advantageous one – that is, one that is more conducive to your well-being.  This would hugely expand the scope of what is considered disabling or enhancing.  For instance, there may be all kinds of real and hypothetical things you could change about your body and mind that would (at least potentially) be advantageous: you could mend a broken arm or stop a tumour from spreading, but you could also vastly sharpen your senses, take a drug that makes you more likeable, stop your body from expiring before the age of 100, or even change the scent of your intestinal gases to a rosy fragrance.

Would all such changes be instances of enhancement? more…

Healthcare Ethics Consultants’ Place in the World of Health Care ‘Professionals’

17 May, 16 | by BMJ

Guest Post by Abraham Schwab

During a recent meeting at a local hospital, I was asked what role a good Healthcare Ethics Consultant should play.  I gave a more ambiguous answer than I would like.  I pointed out that Healthcare Ethics Consultants can help patients, providers, and administrators come to a common understanding of the values at play in a particular health care situation.  A Healthcare Ethics Consultant can also help them reach a decision that reflects the medical realities, the patient’s values, and, as appropriate, the families’ values.  But I also pointed out that the role of the Healthcare Ethics Consultant is determined by the particular institution’s needs.  One institution’s Healthcare Ethics Consult can look like another’s Family Care Conference or another’s Palliative Care Consult and so on.  In short, the Healthcare Ethics Consultant’s role and responsibilities is not neatly defined across institutional boundaries.

The American Society of Bioethics and Humanities (ASBH) Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants aims to “set out the core ethical responsibilities of individuals performing healthcare ethics consultation.”  If successful, it would provide guidance as clinical ethicists and others attempt to answer the question, “What is a Healthcare Ethics Consultant responsible for?”.  Looking over the ASBH’s code, however, it’s hard to imagine using it to provide a content-rich and clear answer.   As I argue in my paper, “The ASBH Code of Ethics and the Limits of Professional Healthcare Ethics Consultations”, the code falls short of its goal in two substantive ways.  First, the Code implicitly relies on the category “professional”, despite the fact that this category lacks clear definition.  Second, the code articulates only vaguely defined responsibilities.

The ASBH’s Code of Ethics is a short document – less than five pages – but invokes the word “professional” 14 times.  That the word is not defined in the code is of no surprise: the use of “professional” is common coin in health care fields.  And yet, the category “professional” is poorly defined.  As I argue, the best available definition is a formal one: professionals share a common commitment to something.  But that something remains undefined in general.  The concept of “profession” is a placeholder indicating that practitioners of a particular occupation have taken on certain additional obligations, and those obligations are specific to the profession in question.  When an occupation claims to be a “profession”, a necessary follow-up question is, “But what does that mean for your occupation?”  Ideally, the ASBH’s Code of Ethics would answer this question for Healthcare Ethics Consultants.

In this regard, the ASBH’s code falls far short.  Most of the broadly defined obligations could be the obligations of any occupation.  The obligations also include conceptual confusions, from conflating privacy and confidentiality to invoking the requirement that Healthcare Ethics Consultants should meet professional standards – the very standards that the Code itself should be providing.

Despite these shortcomings, I write to criticise the ASBH code, not to bury it.  Healthcare Ethics Consultants play important roles in the institutions in which they exist.  Help in defining their responsibilities is needed.  And so I also provide a suggestion for moving the ASBH code forward.  Specifically, the relationships between  “professionals” in health care has shifted.  The isolated responsibilities of the isolated physician have gone the way of the country doctor.  The work of health care “professionals” is now the work of a team and a system, and the responsibilities that attach to these “professionals” are team-based responsibilities.  Further defining the responsibilities of Healthcare Ethics Consultants will require a more comprehensive collaboration across disciplinary boundaries.

If the ASBH’s Code of Ethics and Professional Responsibilities for Healthcare Ethics Consultants is to help answer the question, “What role does a Healthcare Ethics Consultant play?”, it’s next iteration will have to provide more narrowly and clearly defined responsibilities.

Read the full paper here.

China’s Terrible Transplant Secret

9 May, 16 | by BMJ

Guest Post by Wendy Rogers
Earlier this year, a Malaysian politician, Datuk Bung Moktar Radin, travelled to China to receive a kidney transplant.  The details are scanty. There is no mention of the source of the kidney that the Malaysian MP received.  Reports of foreigners travelling to China for transplants rarely make the media, yet they may be an important link in trying to untangle the secrets of China’s secretive transplant system.

Back in the early to mid-2000s, Chinese hospitals brazenly advertised on the internet for foreign customers, offering kidney, liver and heart transplants with astonishingly short waiting times of 2-4 weeks.  In contrast, patients in countries like Australia, the UK, and the US typically wait years, with many dying before an organ becomes available.  Despite initial denials, Chinese officials eventually admitted that virtually all their organs were sourced from executed prisoners.  Using executed prisoners as organ donors is uniformly considered unethical because of concerns that prisoners may be manipulated or coerced rather than being genuine volunteers.  Voluntary donation is at the heart of most transplant programs world-wide, although there are exceptions.

Violating this ethical principle by selling organs from executed prisoners to foreign (and Chinese) patients might seem enough to make China a pariah in the international transplant community.  But this is only one part of China’s terrible transplant secret. Reputable international investigators have gathered evidence that Chinese prisoners of conscience, mainly Falun Gong practitioners, Uyghurs, house Christians and Tibetans, are murdered for their organs.  Falun Gong practitioners, who make up the bulk of the millions of Chinese citizens in “re-education through labour (laojiao)” camps, are subject to medical tests to examine the health of their transplantable organs.  This process creates a living organ bank where foreign patients and wealthy Chinese citizens can be matched to potential donors, who are then killed on demand so that their organs can be transplanted. This reverse matching process guarantees a suitable organ within a very short waiting period. more…

Special Obligations: What Can Physicians Learn from Parenting?

6 May, 16 | by bearp

Guest post bJon Tilburt and Baruch Brody

Editor’s note: this post introduces a recent paper by the authors now in press at the Journal of Medical Ethics: “Doubly distributing special obligations: what professional practice can learn from parenting

Gaps between our ideals and our behavior are common. Sometimes what we say we believe and what we actually practice differ because we fail to live up to what we actually believe. Doctors who are disingenuous, selfish, corrupt, or duplicitous in their actions must own their failures to live up to their said ideals. Other times we use oversimplified language to describe a said ideal because the wording feels right even when that language is not strictly speaking accurate and never has been completely true in lived reality.

According to a traditional ethic of medicine, part of what makes medicine a profession is that doctors sign up for a greater level of service and self-effacing care to some people, namely our patients.  Taking care of my patients is my particular job.  If I consider someone my patient, that means something about what I owe them in terms of time, attention, and care.  I will stay late for my patient; I don’t have special obligations to all of the patients who show up at my institution or who live in my community; I have special obligations to my patients.

more…

Where to Publish and Not to Publish in Bioethics

5 May, 16 | by bearp

Guest Post by Stefan Eriksson & Gert Helgesson, Uppsala University

* Note: this is a cross-posting from The Ethics Blog, hosted by the Centre for Research Ethics & Bioethics (CRB) at Uppsala University. The link to the original article is here. Re-posted with permission of the authors.

Introduction

Allegedly, there are over 8,000 so-called predatory journals out there. Instead of supporting readers and science, these journals serve their own economic interests first and at best offer dubious merits for scholars. We believe that scholars working in any academic discipline have a professional interest and a responsibility to keep track of these journals. It is our job to warn the young or inexperienced of journals where a publication or editorship could be detrimental to their career. Even with the best of intent, researchers who publish in these journals inadvertently subject themselves to criticism. We have seen “predatory” publishing take off in a big way and noticed how colleagues start to turn up in the pages of some of these journals. This trend, referred to by some as the dark side of publishing, needs to be reversed.

more…

Patient Views about Consent, Confidentiality & Information-Sharing in Genetic Medicine.

29 Apr, 16 | by BMJ

Guest post by Sandi Dheensa, Angela Fenwick and Anneke Lucassen

Imagine you’re a clinician in genetic medicine.  For a while, you’ve been seeing Joe Bloggs, a patient with a mutation in a gene that’s caused a hereditary form of colon cancer.  As is your standard practice, you help Joe identify who in his family is also at risk and spend some time talking about how he’ll tell them.  The Bloggs’ are a large bunch: Joe has children, siblings, nieces, nephews, aunts, uncles, and cousins, all of whom might have the mutation.  Anyone who tests positive would be eligible for regular bowel screening, which – while not pleasant – makes it much more likely that any cancer will be caught at a  treatable stage.  Unfortunately, despite all this, you’ve reason to believe that Joe hasn’t told his relatives anything and now you’re unsure what to do.

What are your options?  You might say Joe’s confidentiality and autonomy are paramount: it’s up to him what he does, and, as his doctor, you’ve done your part by telling him the cancer is heritable.  Or you might argue that Joe’s family needs to know – but how  and when?  The GMC says you can share a patient’s personal information without consent if the benefit of doing so outweighs the risk: does the situation meet this criterion?  What if you share the information and Joe sues you for breaching his confidentiality?  But what if you don’t say anything and a relative develops a cancer that could’ve been prevented?  Won’t their trust in the health service be shaken if they knew you’d chosen not to share?  Indeed, the UK and Netherlands have recently seen cases where relatives  questioned the health service’s non-disclosure of relevant information.

Taking a “joint account” view of confidentiality from the outset would’ve avoided these situations.  The joint account involves viewing genetic and personal information as distinct: the possible inheritance of cancer is common to the whole Bloggs family, but that Joe has stage III bowel cancer is personal.  If genetic information is confidential to the family, not just the tested patient, you’d have told Joe upfront, before even drawing his blood, that you’d look into sensitive and appropriate ways to let his relatives know the information if they might benefit from it.  Later down the line, when it materialised he hadn’t told his family, it would’ve been easier to negotiate what to do.

In our recent JME paper, we explored the views of people affected by hereditary cancer and other conditions regarding the distinction between genetic and personal information, the levels of confidentiality afforded respectively, and healthcare professionals’ roles and responsibilities toward their patients’ relatives.

In line with the joint account approach, our interviewees considered their signs, symptoms, and diagnoses as personal, but thought genetic risk was familial and that their relatives needed to know about it. more…

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