You don't need to be signed in to read BMJ Blogs, but you can register here to receive updates about other BMJ products and services via our Group site.

Blogosphere

Charlie Gard: An Ethical Analysis of a Legal non-Problem

11 Aug, 17 | by Iain Brassington

(Cross-posted from EJIL: Talk!)

For those with an internet connection and an interest in current affairs, the story of Charlie Gard been hard to avoid recently.  A decent précis is available here; but it’s worth rehearsing.

Shortly after his birth, Charlie’s health began to deteriorate, and he was diagnosed with a terminal and incurable mitochondrial DNA depletion syndrome.  By March 2017, Charlie needed artificial ventilation, and doctors at Great Ormond Street Children’s Hospital (GOSH) applied to the High Court for confirmation that removing that ventilation would be lawful, having judged that it was not in his best interests.  This was contested by his parents, Chris Gard and Connie Yates; the High Court ruled in favour of GOSH.  This was confirmed by the Supreme Court and the European Court of Human Rights.  During all this time, Charlie remained ventilated.

In the High Court, Mr Justice Francis said that his decision was subject to revision should new evidence emerge favouring continued treatment; in July, Charlie’s parents returned to the High Court, claiming that Charlie might benefit from an experimental treatment being offered by Professor Michio Hirano of Columbia University.  However, as proceedings advanced, it became clear that Hirano’s proposed treatment had never been used on patients like Charlie, that he had neither seen Charlie nor read his notes when he offered the treatment, and that he had a financial interest in that treatment.  The position statement issued by GOSH on the 24th July barely hides the hospital’s legal team’s exasperation.  On the 24th July, Charlie’s parents dropped their request for continued treatment.  The details of Charlie’s palliative care were still disputed; his parents wanted it to be provided at home, with ventilation maintained for a few days.  The High Court ruled against this on the 27th July.  Charlie was moved to a hospice; his ventilator was removed, and he died on the 28th July, a few days before his first birthday.

The way this case has played out has not been pretty.  Elements of the American media (this piece, which I’ve mentioned before, is one among many) and the political right wing used it to launch attacks on single-payer healthcare systems:

Nigel Farage weighed in, complaining about the state taking away parental rights:

From the left, Giles Fraser wrote that the case was being dealt with too rationally.  None of these claims is justified, and many left-leaning people have been surprised to find themselves in agreement with Melanie Phillips on this matter.

Legally, the case was very straightforward. more…

“NOW’s interest in pharmaceutical gender equity seems to have disappeared with its funding.”

15 Jun, 17 | by Iain Brassington

There’s a remarkable piece on the Hastings Center’s blog by Alycia Hogenmiller about a drug called Addyi.  Addyi is a drug that doesn’t work to treat a condition that doesn’t exist, pushed by campaigners who are actually industry shills.

Sprout Pharmaceuticals, run by Cindy and Robert Whitehead, was determined to obtain regulatory approval for flibanserin (Addyi), an antidepressant-turned-aphrodisiac that had already twice failed to gain approval by the FDA.  To create this fake feminist campaign, Sprout hired Blue Engine Media, a PR firm that created a sham organization called Even the Score. The campaign hired two feminists: a former director of the FDA Office of Women’s Health, and the former president of the Women’s Research and Education Institute – both well-known to women’s groups.  Even the Score recruited and paid consumer advocacy groups to pressure the FDA into approving flibanserin for Hypoactive Sexual Desire Disorder – a condition previously created by industry to sell another drug.

I want to know more about those people hired.  What were they thinking?  What did they think they were doing?  What weren’t they thinking?

It’s sad to see advocacy groups become mouthpieces for pharma.  It is even sadder when those mouthpieces are feminist groups that should be protecting the interest of women but instead are protecting a company’s bottom line.  Every single one of the advocacy groups that don’t take money from pharmaceutical companies opposed Addyi’s approval and use.  For example, the National Women’s Health Network, the Jacobs Institute for Women’s Health, the National Center for Health Research, the Reproductive Health Technologies Project, and the New View campaign all publicly opposed the drug before and after approval.  “This decision to approve flibanserin is a triumph of marketing over science,” said Cindy Pearson, head of the National Women’s Health Network.

[…]

Addyi was never a true symbol for gender equity.  The drug doesn’t work well and was never safe.

Just roll back a bit…

Every single one of the advocacy groups that don’t take money from pharmaceutical companies opposed Addyi’s approval and use.

Whoa.

Several lessons can be learned from the story of Even the Score.  First, don’t trust, support, or listen to purported consumer advocacy groups that take money from pharmaceutical companies.

D’ya reckon?

Go and read the whole thing.  It’s astonishing.

The conference in respect of which the post is written looks good, too.

What’s the Point of Professional Ethical Codes?

13 Jun, 17 | by Iain Brassington

For a few reasons, I’ve been thinking a bit over the last few months about professionalism and professional codes.  In fact, that’s the topic that’s attracted most of my attention here since… oooh, ages ago.  I find the idea of a code of professional ethics troubling in many ways, but also fascinating.  And one of the fascinating questions has to do with what they’re for.

They can’t be meant as a particularly useful tool for solving deep moral dilemmas: they’re much too blunt for that, often presuppose too much, and tend to bend to suit the law.  To think that because the relevant professional code enjoins x it follows that x is permissible or right smacks of a simple appeal to authority, and this flies in the face of what it is to be a moral agent in the first place.  But what a professional code of ethics may do is to provide a certain kind of Bolamesque legal defence: if your having done φ attracts a claim that it’s negligent or unreasonable or something like that, being able to point out that your professional body endorses φ-ing will help you out.  But professional ethics, and what counts as professional discipline, stretches way beyond that.  For example, instances of workplace bullying can be matters of great professional and ethical import, but it’s not at all obvious that the law should be involved.

There’s a range of reasons why someone’s behaviour might be of professional ethical concern.  Perhaps the most obvious is a concern for public protection.  If someone has been found to have behaved in a way that endangers third parties, then the profession may well want to intervene.  For example: if an HCP knew herself to be a carrier of a transmissible disease but did nothing about it, this would quite plausibly be a matter for professional concern, irrespective of what the law says, or whether anyone had been harmed.  The same would apply if we discovered that a surgeon was unable to function without a large brandy to settle his nerves.  But we’d want to make sure that the professional concern was for the right thing.  It would be inappropriate to sanction someone merely for being a carrier, or for being alcohol dependent.  (Along these lines, it seems defensible to me not to have suspended Martin Royle, a surgeon who falsified prescriptions in order to satisfy his addiction to painkillers.  It’s better to treat an addiction than to punish it.)

A second reason is for the sake of collegiality.  For example, there’s nothing illegal about being  a racist, and there probably shouldn’t be; but it is at the very best distasteful.  Imagine you discover that your colleague is an abiding racist.  It is not hard to see how this knowledge might have implications for your professional interactions – especially (but not only) if you’re a member of one of the groups to which your colleague has a demeaning attitude.  (Indeed, the same might be true if he had used to be a racist, but had changed his attitudes.  I suspect that that’s the sort of thing that might have a fairly long half-life.)  Now imagine that your colleague is a frequent attendee at rallies, held in support of racist policies, that are often associated with threatening behaviour: he doesn’t just dislike some people, but is visibly hostile to them.  That, it seems to me, might be a matter of professional concern, because it will predictably make the working environment much more difficult.  It would be harder to trust this colleague (again, especially but not only if you happen to be a member of one of the groups he hates).  That might be sufficient to raise worries about whether he’s a fit person to do the job in question.  Again, though, there’d have to be a proviso: there is a difference between one’s professional abilities and one’s personal attitudes, and between how one behaves in and out of work.  A surgeon is a surgeon for all that.  So there is a genuine problem here concerning what to do.  But a genuine problem means that there is a cause for concern.

(Indirectly, this second concern might have something to do with public safety, too.  A surgical team in which people are uncomfortable working along side each other may be one in which patient outcomes are affected.  But that would be a further matter, and would not have to collapse into the safety point.  Imagine that the profession is accountancy: it might still be that members of the group would simply be intolerably uncomfortable working alongside their racist colleague, although the audit will still be done perfectly well.  The same will apply in any profession.)

But there’s another factor, which is the status of the profession.  To what extent are professional ethics codes and bodies that judge professionalism in the business of protecting themselves and their high social status?  A couple of recent cases raises that question. more…

Conscientious Objection Accommodation in Healthcare – Clashing Perspectives

24 Mar, 17 | by bearp

by Brian D. Earp / (@briandavidearp)

On behalf of the Journal of Medical Ethics, I would like to draw your attention to the current issue, now available online, which is almost entirely dedicated to the vexing question of conscientious objection in healthcare. When, if ever, should a healthcare provider’s personal conviction about the wrongness of some intervention (be it abortion, euthanasia, or whatever) be accommodated?

In a paper that has already attracted much attention, Ricardo Smalling and Udo Schuklenk argue that medical professionals have no moral claim to conscientious objection accommodation in liberal democracies.

In part, they base their argument on their judgment that “the typical conscientious objector does not object to unreasonable, controversial professional services—involving torture, for instance—but to the provision of professional services that are both uncontroversially legal and that patients are entitled to receive” (emphasis added).

It seems clear that a lot hinges on what is meant by “unreasonable” there–and on who should get to decide what falls under that label. One answer to this question might be, “society should get to decide, through the enactment of laws, which ideally express the view of the majority of people as to what is reasonable or unreasonable in medical and other contexts.”

“Therefore,” this answer continues, “if a doctor thinks that some legally allowed service X is immoral, then she should rally her fellow citizens to lobby their representatives to change the relevant law; but she should not be excused from providing the service, if by law the patient is entitled to receive it.”

“And if she really doesn’t want to do X,” the answer concludes, “she can always leave the profession and take up some other line of work.”

This is a rough summary of what Smalling and Schuklenk do in fact say. I’d be curious to hear what people think. My hunch is that a person’s attitude toward the answer (i.e., whether they see it as good and convincing or not) will depend in large part on what they substitute for “X” in their minds when thinking about conscientious objection.

more…

Professional Codes and Diagnosis at a Distance

6 Feb, 17 | by Iain Brassington

This is the second part of my response to Trish Greenhalgh’s post on the propriety of medics, psychiatrists in particular, offering diagnoses of Donald Trump’s mental health.  In the last post, I concentrated on some of the problems associated with making such a diagnosis (or, on reflection, what might be better called a “quasi-diagnosis”).  In this, I’m going to concentrate on the professional regulation aspect.

Greenhalgh notes that, as a UK medic, she is bound by the GMC’s Duties of a Doctor guidance,

which – to my surprise – does not explicitly cover the question of a doctor’s duty towards a public figure who is not his or her patient.

[…]

My reading of the GMC guidance is that in extreme circumstances, even acknowledging the expectation of how doctors should normally behave, it may occasionally be justified to raise concerns about a public figure (for example, when the individual is relentlessly pursuing a course of action that places many lives at risk). Expressing clinical concern in such circumstances seems to involve a comparable ethical trade-off to the public interest disclosure advice (Duties of a Doctor paragraphs 53-56) that breach of patient confidentiality may be justified in order “to prevent a serious risk of harm to others.”

Well, to be honest, it’s not that much of a surprise to me that the GMC guidelines doesn’t stretch to public figures – but that’s a minor point.

The more interesting thing for me is what the relationship is between the practitioner and the GMC.  Greenhalgh ends her post by saying that she “wrote this blog to promote further debate on the topic and invite the GMC to clarify its position on it”.  But why should the GMC’s position be all that important?

OK: I’m going to go off on a bit of a tangent here.  Stick with me. more…

Diagnosing Trump

5 Feb, 17 | by Iain Brassington

It doesn’t take too much time on the internet to find people talking with some measure of incredulity about Donald Trump.  Some of this talk takes the tone of horrified fascination; some of it is mocking (and is accompanied by correspondingly mocking images); and some people are wondering aloud about his mental health.  In this last category, there’s a couple of sub-categories: sometimes, people are not really talking in earnest; sometimes, though, they are.  What if the forty-fifth President of the United States of America has some kind of mental illness, or some kind of personality disorder?  What if this affects his ability to make decisions, or increases the chance that he’ll make irrational, impulsive, and potentially dangerous decisions?

This does raise questions about the proper conduct of the medical profession – particularly, the psychiatric profession.  Would it be permissible for a professional to speak publicly about the putative mental health of the current holder of the most important political office in the world?  Or would such action simply be speculation, and unhelpful, and generally infra dig?  More particularly, while the plebs might say all kinds of things about Trump, is there something special about speaking, if not exactly ex cathedra, then at least with the authority of someone who has working knowledge of cathedrae and what it’s like to sit on one?

As far as the American Psychiatric Association is concerned, the answer is fairly clear.  §7.3 of its Code of Ethics, which you can get here, says that

[o]n occasion psychiatrists are asked for an opinion about an individual who is in the light of public attention or who has disclosed information about himself/herself through public media. In such circumstances, a psychiatrist may share with the public his or her expertise about psychiatric issues in general. However, it is unethical for a psychiatrist to offer a professional opinion unless he or she has conducted an examination and has been granted proper authorization for such a statement.

This rule is nicknamed the “Goldwater Rule”, after Barry Goldwater, the Senator who sued successfully for damages after a magazine polled psychiatrists on the question of whether or not he was fit to be President.  Following the rule would appear to rule out making any statement about whether a President has a mental illness, a personality disorder, or anything else that might appear within the pages of the DSM.

Over on the BMJ‘s blog, Trish Greenhalgh has been wondering about what a doctor may or may not do in cases like this:

I have retweeted cartoons that mock Trump, because I view satire and parody as legitimate weapons in the effort to call our leaders to account.

But as a doctor, should I go further? Should I point out the formal diagnostic criteria for a particular mental illness, cognitive condition, or particular personality disorder and select relevant examples from material available in the public domain to assess whether he appears to meet those criteria?

Her post is long, but it does generate an answer:

I believe that on rare occasions it may be ethically justified to offer clinically-informed speculation, so long as any such statement is clearly flagged as such. […] I believe that there is no absolute bar to a doctor suggesting that in his or her clinical opinion, it would be in the public interest for a particular public figure to undergo “occupational health” checks to assess their fitness to hold a particular office.

Her phrasing is such as to leave no bet unhedged – she’s careful not to say that she’s talking about anyone in particular; but, beneath that, the message is clear: it might be justifiable to depart from the Goldwater Rule to some extent in certain hypothetical circumstances.

My post in response will also be long – in fact, it’s going to spread out over two posts.  I think she’s plausibly correct; but the way she gets there is not persuasive.

more…

Chappell on Midwives and Regulation

2 Feb, 17 | by Iain Brassington

Richard Yetter Chappell has drawn my attention to this – a blog post in which he bemoans the Nursing and Midwifery Council’s rules about indemnity insurance, and the effects that they’ll have on independent midwives.  (I’d never heard of independent midwives – but an IM – according to Independent Midwives UK – is “a fully qualified midwife who has chosen to work outside the NHS in a self-employed capacity”.)  In essence, what’s happened is that the NMC has ruled that the indemnity cover used by some IMs – around 80, nationwide, according to some reports – is inadequate; these 80 IMs (out of 41000!) are therefore barred from working.

I’ve got to admit that this seems like a bit of a storm in a teacup to me.  For sure, there may have been infelicities about the way that the NMC handled its decision.  That may well be unfortunate, but it may not be all that much to get excited about.  However, Chappell makes two particularly striking points.  The first is his opening claim, in which he refers to this as “a new low for harmful government over-regulation”.  Well, it’s not really government overregulation, is it?  It’s the NMC.  Governing bodies are not government.  And whether it’s overregulation at all is a moot point: we need more information about what the standard is by which we should assess any regulation.  That leads us to the second striking thing that Chappell says, to which I’ll return in a moment.  Whether it’s harmful is also a moot point.  I mean, it may be true – as he points out – that the decision will have an undesirable impact on the relationship between some women and their chosen midwife.  But that won’t tell us anything about whether the policy is desirable all told.  It’s certainly not enough to warrant calling it “unethical” – and to dub something unethical is not a moral argument.

The second striking thing is this: more…

Professionalism, or Prying?

3 Jan, 17 | by Iain Brassington

“Professionalism” is a funny thing.  About this time last year, I was struggling to get a new course written for the coming semester; it was on professional ethics for lawyers.  A colleague made a comment along the lines that I must be spending a lot of time looking at the professional codes; I replied that I’d be spending almost none doing that; she looked baffled and wandered off, presumably convinced that I was joking.

I wasn’t joking.  I did look a little at the professional codes, but only as a jumping-off point.  My schtick was more like, “Here’s what the SRA says about client confidentiality; now let’s spend the remaining 98% of this lecture looking at why it might say that, and whether it ought to say something different”.

Yet, as I wrote the lectures, professionalism – not professional codes, but professionalism – did keep cropping up.  After all, if you’re going to talk about lawyers’ ethics, or doctors’ ethics, or engineers’ ethics, the implication has to be that there’s something quite specific that applies to each of those professions, otherwise it just collapses into… well, ethics; and it might be that there is a clear way to define who belongs to the profession, and a clear hierarchy, and that it is proper (or, at least, it may be proper) that there is some sort of pressure exerted by that hierarchy that shapes behaviour in a way that neither the law nor standard social norms do.  There are some things that are regulated by professional ethics that aren’t regulated by bog-standard ethics.  To return to the lawyers’ example, there might be certain things that are acceptable or even required from a lawyer that wouldn’t be in other cases, and other things that are unacceptable that are trivial outside the profession; and the same might apply to medics.  (In passing, I think that that might be one of the fault lines in academic medical ethics: those of us that come from a philosophical background understand “ethics” to mean one thing, and those of us who come from a medical or, in at least some cases, a social science background understand it to mean another.  We normally rub along fine, but sometimes we are talking at cross-purposes.)

A range of problems arises from that, though.  For example, though codes of ethics might attempt to codify what it is that’s demanded by professionals, they’re often rather vague, or presuppose a heck of a lot that’s actually rather important.  That can lead to situations in which it’s impossible to tell what’s required on the ground.  “Maintaining the reputation of the profession” is a concern of some of the professional codes I’ve seen, though quite what that means is anyone’s guess, since it might collapse to “doing whatever keeps the public on side, no matter how senseless”; and while that might maintain esteem in one sense, it does so only by undermining the concept of professional integrity.

A second problem comes from the need to know what things are properly within the “professional” remit, and what professional bodies have any business talking about.  The difficulty here is that “professionalism” implies living a kind of life; being a professional involves being a certain kind of person.  One doesn’t stop being a professional when the end-of-shift klaxon goes.  And yet there’re certain things that do have nothing to do with professional regulation: whether or not to be teetotal is not a professional matter, and a professional body that tried to involve itself in such decisions would be stepping over the line.  Still, where the line should be drawn may not be obvious.

All of this brings me to this blog post over on the BMJ blog, in which Niro Kumar considers doctors and dating apps. more…

Gouging

26 Aug, 16 | by Iain Brassington

Jumping to the defence of pharmaceutical companies over their pricing policies isn’t fashionable – and a lot of the time, it’s not going to end prettily.  But it’s perfectly coherent to think that the profit motive is one of the motors of innovation, and that it’s part of the quid pro quo for spending money on drugs that may do nothing; in fine, that the profit motive may actually be a necessary part of getting the good stuff we want.  To an economist, the phrase “normal profit” means the minimum profit necessary to keep a firm going – where average revenue equals average total cost.  But if that was all that was on offer, there’d be no incentive to enter a market in the first place: if you’re (on average) in the same place as you were before entering the market, why bother?  So it’s reasonable to think that there ought to be some level of supernormal profits.  They help ensure we get a world that’s better tomorrow than it was yesterday.

On this account, the problem is not with making a supernormal profit – oh, all right then: what in everyday English we’d simply call a profit – but with gouging and/ or profiteering.  The question that needs to be addressed is one of what level of profit, and what kind of return on investment, is reasonable.  In some sectors of the economy, it may be quite high.  For example, if I can manufacture a luxury good for which people are willing to pay through the nose, and make a stonking great profit from it… well, all hail me.  In other sectors, this will not be the case.

The determinants of the level of acceptability will depend on all kinds of factor.  It’s a complicated question, and it may defy satisfactory answers from time to time.  All the same: one doesn’t have to be able to say that or why x is good in order to be able to say that y stinks.  The story about EpiPen pricing that’s emerged over the last week or so is one such case.

Here’s the story: EpiPens deliver a dose of adrenaline, and are therefore very useful in cases of allergic reaction.  Adrenaline is not expensive, but delivering it via a syringe is cumbersome; EpiPens make it much simpler.  Mylan Pharmaceuticals obtained the rights to the device in 2007; since then, the price has risen by somewhere between 400 and 500% in the US (different sources offer different amounts; but a pack of two EpiPens costs about $415 in the US, and about $85 in France).  That’s bad enough on the face of it, though Mylan CEO Heather Bresch does apparently have a defence, as Fortune explains: more…

Free Labour and Quiet Doubts

1 Aug, 16 | by Iain Brassington

Those of us on the academic side of things will almost certainly recognise the situation: you’re sitting in your school’s Teaching & Learning committee, or a staff/student committee meeting, or something like that, and you hear the complaint from students that they should get more contact time.  Academics should spend more time teaching rather than simply doing their own research.  After all, they’re paying however-many thousand pounds for their education.

And you’ll’ve heard the standard rebuttals – and maybe even trotted them out yourself: that course fees cover not just teaching costs, but libraries, labs, buildings and so on; that university learning isn’t about hours in a classroom; that teaching and research are intertwined; that students benefit from being taught by the people who’re writing the papers they’re reading.  But I wonder if these standard responses miss something important.

Back in April, I was getting companionably smashed with some of my final-year students, and we were talking about what they were going to do when they’d graduated, and about possible careers.  One or two were interested in academia, and so a part of the conversation concerned what life’s like from my side of the fence.  Predictably, pay was one thing that interested them.  I mentioned that I’d made about £80 in total from the books I’ve written, spread over 10 years.
“And what do you get paid for a paper?”
I held back my bitter laughter, and explained how much you get paid for papers, and how much you get for peer-reviewing, and all the rest of it.  The students had had no idea that this stuff was expected of us, but not remunerated.  Why would they?  Indeed, isn’t it insane that we’re not paid?

I think that one gets an insight here into students’ complaints about academics’ priorities being wrong.  If they think that we get paid for publishing papers, then of course they’re going to think that we have an incentive to resist extra contact hours – and everything we tell them about extra contact hours being at best academically unnecessary, and likely as not counterproductive, will sound like so much bad faith.  After all, of course we’d tell them that a course only needs 30 hours of lectures rather than 60 if we could be earning extra money with those spare 30 hours.

What prompts all this is an article in the Chronicle of Higher Education.  It’s from 2012, but it’s started popping up in my social media timelines this morning, and Carl posted it on Fear and Loathing in Bioethics last night.  It makes a proposal: more…

JME blog homepage

Journal of Medical Ethics

Analysis and discussion of developments in the medical ethics field. Visit site



Creative Comms logo

Latest from JME

Latest from JME

Blogs linking here

Blogs linking here