7 Feb, 17 | by miriamwood
Guest Post: Bengt Kayser and Jan Tolleneer
Paper: Ethics of a relaxed antidoping rule accompanied by harm-reduction measures
Doping in sports continues to be prominently present in the media. Regularly ’scandals’ surface that then trigger flurries of articles, documentaries and reactions in the media. The general tone is one of moral opprobrium, dopers are considered deviant and bad. Frequently these episodes are accompanied by arguments for more means for repression of doping. These efforts, in principle coordinated by the World Anti Doping Agency (WADA), aim at eradicating doping from sports.
Doping is considered cheating and dopers are bad. But despite increasing means doping remains rife, leading to what some call an arms race in a war on doping. Anti-doping still continues to cling to its essentialist objective, getting rid of this behaviour, even though it appears increasingly clear that this objective cannot be reached. Already today athletes have to comply with exceptional rules, such as the obligation to inform about their whereabouts 365 days a year in order to allow in and out of competition unannounced urine and blood sampling for anti-doping controls. But calls for more means and more repression resound. Increasingly countries, pressurized by the International Olympic Committee and WADA, introduce criminal law to repress doping, in several countries also applicable to non-athletes.
But repression of human behaviour comes with a cost. Prohibition of alcohol in the USA in the first part of the last century is good example, as is the so-called war on drugs. Like the latter, anti-doping also has unintended side-effects and it is possible that the overall societal cost of anti-doping may surpass the positive effects of anti-doping. The question then arises if there exist alternative approaches to dealing with doping. But so far the only two discourses on alternatives for dealing with doping focus on either repression or liberalisation.
In our recently published paper in the Journal of Medical Ethics we argue that there is an ethically acceptable alternative somewhere mid-stance. Our point of departure is a partial relaxation of the anti-doping rule, accompanied by harm reduction measures, in a dynamic setting, i.e. adaptable over time in reaction to what the effects would be. We develop our arguments on five levels: (1) What would it mean for the athlete (the self)? (2) How would it impact other athletes (the other)? (3) How would it affect the phenomenon of sport as a game and its fair play basis (the play)? (4) What would be the consequences for the spectator and the role of sports in society (the display)? and (5) What would it mean for what often is considered as essential to being human (humanity)? Our analysis suggests that a partial relaxation of the anti-doping rule accompanied by harm-reduction measures appears ethically defensible on all five levels. Our proposed alternative framework thus potentially provides an escape from the present spiralling towards criminalisation of doping and doping-like behaviour in society. It is time to start discussing the practical details of such a policy change and to start experimenting.
6 Feb, 17 | by miriamwood
Guest Post: Dr Selena Knight and Dr Wing May Kong
Paper: Bridging the education-action gap – a near-peer case-based undergraduate ethics teaching programme
Medical ethics and law is a compulsory part of the UK undergraduate medical school curriculum. By the time they qualify, new junior doctors will have been exposed to ethics teaching in lectures and seminars, through assessments, and during clinical placements. However, does this really prepare them for the ethical minefield they will encounter as doctors?
Following my own graduation from medical school I started as a foundation year doctor in a busy London teaching hospital. Despite having had more exposure to ethics and law teaching than most by having completed an intercalated BSc in the subject, I found as a new doctor that I was often encountering ethical dilemmas on the wards but felt surprisingly ill-equipped to deal with them. I was generally able to identify that I was facing an ethical dilemma, but frequently found myself stuck when coming up with a practical solution.
If I felt like this having had an additional year of studying ethics and law, how on earth were other new doctors coping? In fact, when questioning my peers about their experiences they described that they also encountered dilemmas, but either didn’t specifically identify them as ethical in nature (e.g. they described feeling uncomfortable or uneasy with a decision made or a particular situation but couldn’t pinpoint why) and frequently described being unable to do anything to improve the situation either because they didn’t know what to do or they didn’t feel confident to speak up/rock the boat e.g. if they experienced a consultant acting unprofessionally
It became clear that even if ethics teaching at medical school was providing sufficient knowledge to enable junior doctors to identify ethical dilemmas, it was failing to prepare them to actually deal with such issues in practice. My own experiences, together with those I heard from my peers, formed the inspiration for the teaching programme that was subsequently designed.
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…
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.
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…
2 Feb, 17 | by miriamwood
Guest Post: Rob Lawlor
Re: Cake or death? Ending confusions about asymmetries between consent and refusal
Imagine you have an adolescent patient who is in need of life saving treatment. You offer him the treatment, assuming that he would consent, but he refuses. As he is not yet a competent adult, you decide to treat him despite the fact that he wishes to refuse treatment.
Now consider the question: does it make sense to say that there is an asymmetry between consent and refusal?
If you are familiar with the term “asymmetry between consent and refusal”, the chances are that you will believe that you know what the question means and you are likely to have an opinion regarding the answer. And if you are like John Harris, you may also think that the answer is obvious and that any other answer would be “palpable nonsense”. However, if you are not familiar with the term or with the relevant literature, you may be far less confident that you even understand the question.
Despite their lack of familiarity with the question, I believe the latter group may have a better understanding of the issue than the first group. Why? Because these people are wondering, “What does this question mean?” My claim is that we would make more progress if more people took the time to ask this question. The phrase “the asymmetry between consent and refusal” allows us to capture the topic of a particular debate in a fairly succinct way, but I suggest that it obscures the ethical issues, rather than illuminating them.
25 Jan, 17 | by miriamwood
Guest Post: Danielle Bromwich and Joseph Millum
Paper: Informed Consent to HIV Research
Special Issue: The benefit/risk ratio challenge in clinical research, and the case of HIV cure
A cure for HIV would be tremendously valuable. Approximately 37 million people worldwide are HIV-positive and 15 million are currently on antiretroviral therapy. Until recently it was assumed that this therapy would be the extent of HIV treatment and that those with access to it would need to take their drugs for life. But what once seemed impossible is now in early phase clinical trials: interventions designed to completely eradicate HIV from the immune system.
Excitement surrounding these “HIV cure” studies is tempered by ethical concern. They require participants to come off their antiretroviral therapy and undergo highly risky interventions using gene transfers or stem cell therapy. These are currently proof of concept studies—no one expects the participants to be cured. Their purpose is to provide essential information about safety and pharmacokinetics, but in doing so they expose participants to high risks with little prospect of direct benefit.
If we could be confident that participants understood their trials’ true risk-benefit ratio, these high risks might be less troubling. But such confidence would be misplaced. Decades of data show poor comprehension of risk among participants in clinical trials. The fact that HIV is still a stigmatized condition amplifies this concern. Potential participants may be desperate to be rid of their disease and so downplay the risks and exaggerate the potential benefits. Understandably, HIV cure researchers and research ethics committees are worried. What should they do with a patient-participant who wants to come off his medication and receive a high-risk experimental intervention because he thinks that he’ll be “the one” who is cured?
Informed consent is generally thought to be one key protection for participants enrolled in risky studies. The standard view of informed consent says that valid consent requires the person giving consent to understand the risks and benefits of study participation. According to this view, someone who seriously misunderstands the study’s true risk-benefit ratio can be excluded on the grounds that he has not given valid consent to study participation.
In a recent paper, part of a special collection on HIV cure research in the Journal of Medical Ethics, we analyze a range of concerns about informed consent for HIV cure trials.
11 Jan, 17 | by Iain Brassington
Guest Post by David Lock QC
[NB: This is a slightly longer version of a post that appeared on the BMJ blog earlier today.]
Politicians, delusional managers and the future of the NHS: have NHS leaders failed to “speak truth unto power”?
This blog is not a rant – well not too much of a rant. It is an expression of serious frustration about the way the NHS is run and about the willingness of senior NHS managers to become complicit in dishonesty. It also needs to acknowledge the brave role of some in the NHS – particularly in NHS Providers – who keep telling it as it is and being decried for doing so.
Everyone at the frontline knows the NHS is running on empty. The more perceptive know that more money for the NHS alone will not improve services for patients. But – and this is perhaps the unpopular “but” – NHS senior managers ought to accept their share of the responsibility for the present crisis. The problem is the failure of NHS managers to “speak truth unto power” to those above them and to our political masters for too many years. Long before Sir Ivan Rogers used the phrase, a 2015 FCO blog explained the centrality of this concept as part of public service as follows:
The UK Civil Service doesn’t have an official motto – but if it did, it would almost certainly be: “speak truth unto power”. It’s a maxim that’s in the blood of good civil servants, even if they know that it won’t make their lives any easier. The best politicians learn to cherish civil service advice which points out the flaws in their arguments. The worst surround themselves with sycophants who create a micro-climate which wraps a warm embrace around their worst tendencies.
But, this principle appears respected in the breach in the NHS. The £22bn efficiency challenge came out of nowhere and yet became an article of faith. Of course, it has not been delivered and was never going to be delivered, but the planning process has continued in a parallel universe where no one has the courage to say “Actually this is nonsense – a public service has never delivered these efficiency savings and the NHS will not do so”. So the fiction is maintained that this is what the NHS has to do by 2020. But, of course, we are now in 2017 and so there is precious little time to deliver the undeliverable.
Secondly, the fiction is that the present government is putting an extra £10bn into the NHS, as well as promising an extra £350m per week as a Brexit dividend. The £10bn claim was never accurate. No set of “true and fair” NHS accounts could ever include the £10bn claim. The £350m a week claim was made for votes, not for spending. And yet who in the NHS has held the government to account for either promise? more…
Guest Post by Professor Lynn Turner-Stokes
Re: A matter of life and death – controversy at the interface between clinical and legal decision-making in prolonged disorders of consciousness
In an article published in the JME, I highlight the confusion that exists amongst many clinicians, lawyers and members of the public about decisions with withdraw life-sustaining treatments from patients in permanent vegetative and minimally conscious states.
Recent improvements in acute care for patient who have suffered catastrophic brain injury undoubtedly save lives. However, some patients who would otherwise have died now survive but remain profoundly disabled. Many patients experience a brief period of unconsciousness (or ‘coma’) lasting a few days or weeks. However, an unfortunate few with very severe brain injury remain in a vegetative and minimally conscious state (VS/MCS) for many months – or in some cases permanently.
Unfortunately the lay press, and even much of the medical literature, tends to conflate VS/MCS with coma, but they are in fact very different. Coma is a state of ‘unrousable unresponsiveness’ from which the patient cannot be awakened. It rarely persists for more than a few days or weeks, as the large majority of patients will either die or start to regain consciousness. Patients in VS or MCS are awake, but have either very limited awareness of themselves and their environment (MCS), or none at all (VS). With supportive treatment, many will live in these states for a decade or more.
5 Jan, 17 | by Iain Brassington
Building on the success of three previous conferences held in Edinburgh, Newcastle and London, the 4th Institute of Medical Ethics Summer Conference will take place on the 15th and 16th June 2017 in Liverpool.
Two changes have been made to the conference format for 2017. First, the Research Committee will accept proposals for individual papers as well as for panels. The latter will be allocated 75mins and the time can be used for traditional presentations of 15-20 mins or for more collaborative and discursive interactions. Second, there is a specific call for contributions from the medical humanities. The IME’s Research Committee hopes to include a stream of medical humanities papers across both days of the conference.
Confirmed Keynote Speakers are Prof Rosamund Scott (KCL) and Prof. Stephen Wilkinson (Lancaster).
Further information can be found here, and the IME can be found on Twitta via @IMEweb.
The location and date of this year’s conference have been coordinated with the annual conference of the UK Clinical Ethics Network. Themed “Family Matters”, this will be their 17th Annual Conference. It takes place on the 14th June, and there will be a short IME/ UKCEN crossover session on the morning of the 15th. For further details about UKCEN’s conference see http://www.ukcen.net/.