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In the News

Ebola in the US: Privacy, public interest and the ethics of media reporting

3 Oct, 14 | by David Hunter

The first confirmed case of ebola has been found in the US, in Texas – unsurprisingly someone who had recently been to Africa. This has prompted an outbreak… of unethical media reporting about the case, with several breaches of privacy which seem unlikely to be in the public interest. Specifically the media has disclosed the victim’s full name, then to add insult to injury they published both his address and then a map of where he lives.

The media frenzy around this case is as unwarranted as it is unsurprising – scarily reminiscient of the painfully telling Onion piece – which claimed just 50 more white people needed to die of Ebola before a vaccine would be developed…

But even if we accept that the public is interested in the case (which no doubt they are) and that this interest warrants reporting on it does that give the media the right to release this person’s personal details and movements?

The main argument that can be offered for breaching typical standards of confidentiality is that the breach is in the public’s interest – this is the defense typically usually used in whistle blowing cases and in cases where medical professionals break confidentiality to prevent harm to others.

So isn’t this justification enough? Aren’t all Americans now at risk of ebola, amd hence have a right to know about who has it and where it is so they can choose to minimise their own risk?

It is worth noting that whilst Ebola is to be frank a terrifying disease it is relatively easily containable by the use of routine public health measures such as surveilance, isolation, contact tracing and modern hygiene standards and practices as it is spread through fairly obvious contact with bodily fluids, rather than airborne. And these fluids are only generated once someone is obviously symptomatic. As such there is little chance of a significant outbreak in countries like America or Australia because the number of contacts likely to be exposed to bodily fluids are usually minimal.

So this information is unlikely to help anyone protect themselves from being exposed to ebola – those who were already exposed (if any) have been exposed and are being contacted, and no one will now be exposed to this particular victim, so having their details in the public domain does no good, and has a potential to do harm in three ways:

1. It can reinforce false beliefs – “why would they tell us this if we weren’t at a significantly increased risk?”

2. It creates the potential for witch hunting – where the victim is blamed and potentially harmed – “civic-minded” citizens might take it upon themselves to “minimise” the risk of infection by burning down the apartment building he lives in for example.

3. It may perversely discourage other exposed travellers from seeking medical treatment and attention – it is worth noting that the victim took himself to hospital to seek treatment. If there is considerable public outcry, stigmatisation, distaste and displeasure the next victim may feel their details will be exposed in a similar fashion and avoid medical attention with predictably disasterous effects both for them, and for those potentially exposed to them.

Could spreading this information be helpful for contact tracing? Contact tracing is a public health practice where all those who might have been exposed are identified and contacted – both to see if they have symptoms and in some cases to isolate them until they are cleared. Reporting these details might enable a few people who haven’t been identified as being in contact to self identify, but practices of contact tracing are well established and this is a relatively easy case since his movements are well known and the victim has been able to communicate with public health officials about those he has been in contact with, so it is likely to be of minimal benefit, if anything it might well create more false positives than anything else – with worried people who think they were exposed using up valuable time and resources.

In a deeply misleadingly titled piece: “With Ebola, the public’s right to know trumps patient privacy” Art Caplan an American bioethicist argues that rebuilding and maintaining trust requires the public be given some normally confidential information. He argues there is a public interest in knowing the process of how this case was handled, and his movements so that the public can be reassured about the system and that they were not exposed. It is fair to note that mistakes were made in this case – he then went to hospital and was discharged despite having disclosed that he had recently travelled from Africa. However there is as Art acknowledges a significant difference between releasing this information, and the victims personal private details. It is hard to see how releasing that information really would provide public reassurance? I’d suggest it doesn’t really, instead it feeds fear and distrust which are the greatest killers in epidemics.

Highly dangerous infectious diseases create unique ethical challenges because by their very nature those who suffer them are as Battin et al put it “both victims and vectors of disease“. But whether someone is a victim or a vector of a disease, we ought to remember that they are still a person and as such deserve to have their private information protected, especially if disclosure is unlikely to benefit and may well harm the public’s interests, no matter how interested they are in knowing it.

The Ebola Outbreak in Western Africa: Ethical Obligations for Care

11 Sep, 14 | by BMJ

Guest post by Aminu Yakubu, Morenike Oluwatoyin FolayanNasir Sani-Gwarzo, Patrick Nguku, Kristin Peterson, and Brandon Brown

In our article “The Ebola Outbreak in Western Africa: Ethical Obligations for Care” we focus on the health care system’s ability to combat the recent epidemic of Ebola in Western Africa.  This is a timely and urgent issue.  Many medical ethicists – including those called upon by the WHO – are focusing on availability of experimental drugs, but little is being discussed about on-the-ground care and human rights.  By the time this article was written, in August 2014, there were 1145 deaths from Ebola.  In the news, Ebola treatment facilities were being taken over by armed civilians who stole medicines to protect themselves, resulting in Ebola patients fleeing for their lives and further spreading the virus.  This action has taken a toll on an already limited infrastructure.

The unspoken heroes of the Ebola epidemic are the healthcare workers who brave potential infection to save the lives of those infected.   In Nigeria, nine health care workers were infected, and three health care workers had already died by the time this blog was written.  With this news, willingness of medical staff to provide care for patients with Ebola virus is limited, as the danger to their own life is great.  Moral obligations of healthcare staff to provide care should have limited sanctions for non-compliance so as not to infringe on the healthcare workers right to life.  Workers who do care for Ebola patients must be provided with adequate protective equipment and a safe working environment, as well as compensated if they become infected in the course of duty.  Traditional public health ethics has paid little attention to the protection of the rights of healthcare workers, but the Ebola epidemic has brought this issue to the forefront.  Its time those who are responsible for saving our lives have a voice.

 

Read the full paper here.

UPDATE:  Brandon Brown emails:
I just received a nice on the ground photo (Ebola decontamination) from my collaborators in Nigeria if we can attach to the blog entry.  [Click image for bigger.]

IMG_20140728_182522

 

 

 

Adrenaline, Information Provision and the Benefits of a Non-Randomised Methodology

17 Aug, 14 | by Iain Brassington

Guest Post by Ruth Stirton and Lindsay Stirton, University of Sheffield

One of us – Ruth – was on Newsnight on Wednesday the 13th August talking about the PARAMEDIC2 trial.  The trial is a double blind, individually randomised, placebo controlled trial of adrenaline v. normal saline injections in cardiac arrest patients treated outside hospital.  In simpler terms, if a person were to have a cardiac arrest and was treated by paramedics, they would usually get an injection of adrenaline prior to shocks to start the heart.  If that same person was enrolled in this study they would still receive an injection but neither the person nor the paramedic giving the injection would know whether it was adrenaline or normal saline.  The research team is proposing to consent only the survivors for the collection of additional information after recovery from the cardiac arrest.  This study is responding to evidence coming from other jurisdictions that indicates that there might be some significant long term damage caused by adrenaline – specifically that adrenaline saves the heart at the expense of the brain.  It is seeking to challenge the accepted practice of giving adrenaline to cardiac arrest patients.

Our starting position is that we do not disagree with the research team.  These sorts of questions need to be asked and investigated.  The development of healthcare depends on building an evidence base for accepted interventions, and where that evidence base is not forthcoming from the research, the treatment protocols need changing.  This going to be tricky in the context of emergency healthcare, but that must not be a barrier to research.

There are two major ethical concerns that could bring this project to a grinding halt.  One is the opt-out consent arrangements, and the other is the choice of methodology.

Consent, then. more…

On Conflicts of Interest

28 Jul, 14 | by Iain Brassington

It’s only a few days since Richie’s paper on providing IVF in the context of global warming was published, but already there’s been a couple of lines of objection to it that have been fairly widespread; I thought it might be worth nodding to one, and perhaps offering an attempt of a defence against the other.

The first objection is that there’s no justification for the claim about same-sex couples in Richie’s paper – that she shouldn’t have treated homosexuality as a lifestyle choice and as “non-biological” infertility.  I think that there’s significant merit to this objection to the paper; and though neither Dominic nor I mentioned the objection explicitly, I think that it’s there between the lines of each of our commentaries.  (It’s certainly an aspect of the paper that’s picked up by the Telegraph‘s coverage of the paper, and it’s been mentioned a couple of times on Twitter and Facebook by people I know and follow.  (I note that the Telegraph also gave a highly bastardised version of my post here.  Ho hum.))  I think that Richie’s argument would have been at least as strong if she’d talked about providing IVF to anyone whatsoever – the qualifications about different “sorts” of infertility and lifestyle, I suspect, weakened the paper, inasmuch as that a paper with unnecessary and argumentatively weak aspects is more vulnerable to objections generally than one in which those aspects have been left out.  So, yeah: I think that that might count as having been – at best – a strategic error on Richie’s part.

Here’s the other claim that I’ve seen a few times about the paper: that it’s weakened by a conflict of interest because of the author’s affiliation.  This isn’t directly a claim about the quality of the argument in the same way that the previous objection is.  Rather, it’s a claim that there’s something unreliable about the very fact of the argument’s having been put.  (I’m not articulating the distinction very well, but I think you can see what I mean.)  In essence, the worry is this: Richie works for a Jesuit Institution; this isn’t clear from her affiliation in the paper; there’s something iffy about this; this iffiness is some form of conflict of interest and her argument is likely to be biased.

I’m not sure what to make of this. more…

Legal Comment on Nicklinson, Lamb and AM Appeals

27 Jun, 14 | by Iain Brassington

Guest post by Alexandra Mullock, University of Manchester

The Supreme Court, in the long awaited verdict in the Nicklinson appeals, essentially delivered both good news and bad news for all concerned. The appeals by Jane Nicklinson (continuing her late husband’s battle), Paul Lamb and AM (known as Martin) were all rejected. The DPP won her appeal against the court of Appeal’s decision that a more specific prosecution policy was needed. However, the upshot of this highly unusual judgment is that the losers have good reason to feel quite cheerful and the DPP has won a rather hollow victory.

To recap on the facts, the late Tony Nicklinson, who suffered from locked-in syndrome following a catastrophic stroke several years ago, began his legal challenge in the High Court with an application for a declaration that it would be lawful for a doctor to give him a lethal injection or to assist him in terminating his own life by virtue of the common law defence of necessity. If that was not possible, Mr Nicklinson asked the court to declare that the current law (regarding murder and assisting in suicide under the Suicide Act 1961) was incompatible with Article 8 of the Convention. The High Court rejected all these arguments. Immediately following his defeat, Mr Nicklinson refused all food and medical treatment, dying a few days later. However, Mrs Nicklinson continued her late husband’s legal battle and she was joined in the Court of Appeal by another man, Paul Lamb, who applied for the same relief as Tony Nicklinson. A third man, Martin, wants a carer or health care professional to assist him to travel to Dignitas in Switzerland in order to have an assisted suicide, but, in view of the current prosecution policy – which places professional assistors at greater risk of prosecution – such a person would run the risk of a criminal prosecution. Consequently, Martin asked for an order to compel the DPP to clarify and modify her policy so that a compassionate carer, doctor or nurse could assist him. Martin’s claim also failed in the High Court but unlike the others, he won a partial victory in the Court of Appeal.

Following media reports that the Supreme Court Justices were at loggerheads over their verdict, the judgement reflects this conflict and is remarkable in a number of ways. more…

Nicklinson Loses Right-to-Die Case

25 Jun, 14 | by Iain Brassington

No surprises at the result, but the ruling itself looks like it might make for interesting reading.  Analysis to follow…

Their Poor Little Heads might Explode

1 Jun, 14 | by Iain Brassington

There’s a nice little piece by Martin Robbins in this week’s Guardian in which he talks about the fact that women seem to be less supportive of abortion than men.  That does seem counterintuitive, given that… well, given the obvious physiological facts and the relative burden of risks related to pregnancy.  So there’s an interesting little anthropological puzzle here; and he suggests a number of factors that might explain the phenomenon. For example, there’s some research that finds that women are more likely than men to agree that life begins at conception – though, as he points out, while that might help explain the different views of termination, we’d still need to know why more women think that to begin with. Another potential explanation is that men like the idea of not having to do the right thing by their pregnant partners by paying child-support or, if you’re reading this in the 1950s, marrying them: abortion gives a way out of that.  But – and Robbins doesn’t mention this – that again presupposes keeping the baby as the default position to which people are looking for an alternative.  We could also talk about social pressure, and the way that women are still expected to be mothers, and how that feeds into attitudes.  In fact, we could talk about a lot of things:

So which is it? Internalised sexism, men’s liberation, fundamentally different ideas about the point at which life begins, or something else entirely? I doubt only one factor is at work, but it seems that we lack a definitive answer. And that’s a shame, because in the ongoing battle of ideas it seems like a very important question to ask.

I suspect some will deride his “we need to do more research” conclusion, but it seems eminently sensible to say that, faced with a quirk of attitudes, a full explanation would be at least aesthetically satisfying, even if not especially urgent.  He also provides lots of useful links.

Over at the CMF blog, Philippa Taylor’s suggestion – which also has lots of useful links – is a little different. more…

While We’re Talking about Ambiguous Sex

16 May, 14 | by Iain Brassington

So: what is one to make of Conchita Wurst?  I’ve not heard the song that won Eurovision this year, but I’m willing to bet that the world would be a better place if every entrant had been thrown into the Køge Bay before a single note was struck.  But that might just be me.

Conchita-wurst-sausage0

Conchita Wurst. Wurst. Geddit? Wur… Oh, suit yourself

Writing in the TelegraphBrendan O’Neill has other concerns.  Why, oh why, oh why can’t people just use the pronoun “he” when referring to Wurst?  Wurst was born a man; therefore the male pronoun is more appropriate.  (He’s never one to duck the important issues of the day, is Bren.)  “Did everyone overnight transmogrify into a Gender Studies student and imbibe the unhinged idea that gender is nothing more than a ‘playful’ identity?” he asks.  More: the fact that people refer to Wurst with the feminine pronoun is a symptom of what he calls “today’s speedily spreading cult of relativism”, and allowing people to choose their identity is “narcissistic”.

Now, let’s just ignore for the moment that Conchita Wurst is a character, and so it makes perfect sense to call her “her” in just the same way that one might use “her” to refer to Dame Edna Everage.  (Thanks to someone I don’t know on Facebook for making that analogy – it’s a good ‘un.)  O’Neill sort-of-acknowledges that, but he doesn’t let that minor point get in the way of a more general rant against people preferring to be referred to by one pronoun rather than another.  For example, he takes this swipe at Chelsea Manning:

more…

Oh, and while we’re talking about media hype…

1 Apr, 14 | by Iain Brassington

… there’s this, from last week’s Independent:

Thousands of unborn foetuses incinerated to heat UK hospitals

The bodies of more than 15,000 unborn foetuses have been incinerated in the UK, an investigation has found, with some treated as “clinical waste” and others burned to heat hospitals.

The practice was carried out by 27 NHS trusts, with at least 15,500 bodies burned over the last two years alone.

Ten of those trusts admitted to burning more than 1,000 sets of remains along with other hospital rubbish, while two said they were incinerated in “waste-to-energy” furnaces that generate energy used to power and heat hospitals.

Gasp!  One kind of human tissue is disposed of in the same way as other kinds of human tissue!

From the tone of the reporting, one would only be mildly surprised to find people employed to encourage abortions in order that hospitals can save money on fuel.

Except that that’s nonsense.  If clinical waste is incinerated in waste-to-heat plants, it doesn’t follow that it’s being incinerated to provide heating; rather, it’s that the heat from the incinerator is captured and put to use, rather than being wasted.  For sure, the physics is the same; but the emphasis makes a heck of a difference.  (And, as PZ points out, for abortus* to be an effective fuel would require them to be “the most energy-dense substance in the world”.)  So what we actually have is a situation in which an abortus is incinerated.

And the problem with that is…?

Um…

Well, I’m sure there must be one, because health minister Dan Poulter is reported as describing the practice as “totally unacceptable”, and Poulter is an honourable man.

Actually, there is a few things that might strike us as questionable – though as we’ll see, the fact that something prompts a question doesn’t really tell us much, since some questions can be answered easily.   more…

Who’s the SilLIer?

30 Mar, 14 | by Iain Brassington

It’s funny how things come together sometimes.  A few months ago, I mentioned a slightly strange JAMA paper that suggested that non-compliance with treatment regimes should be treated as a treatable condition in its own right.  The subtext there was fairly clear: that there’s potential scope for what we might term “psychiatric mission-creep”, whereby behaviour gets seen as pathological just if it’s undesirable and can be changed with drugs.  I was reminded of this by a couple of things I found last weekend.

I was avoiding work by pootling away on the internet, and stumbled across a couple of things.  This – an article about American politics that notes the use of psychiatry as a means of social control – was one of them:

[In 1980] an increasingly authoritarian American Psychiatric Association added to their diagnostic bible (then the DSM-III) disruptive mental disorders for children and teenagers such as the increasingly popular “oppositional defiant disorder” (ODD). The official symptoms of ODD include “often actively defies or refuses to comply with adult requests or rules,” “often argues with adults,” and “often deliberately does things to annoy other people.”

Many of America’s greatest activists including Saul Alinsky [...] would today certainly be diagnosed with ODD and other disruptive disorders. Recalling his childhood, Alinsky said, “I never thought of walking on the grass until I saw a sign saying ‘Keep off the grass.’ Then I would stomp all over it.” Heavily tranquilizing antipsychotic drugs (e.g. Zyprexa and Risperdal) are now the highest grossing class of medication in the United States ($16 billion in 2010); a major reason for this, according to the Journal of the American Medical Association in 2010, is that many children receiving antipsychotic drugs have nonpsychotic diagnoses such as ODD or some other disruptive disorder (this especially true of Medicaid-covered pediatric patients).

For some reason, I had foxes on my mind as well, and so I entered the word “Fox” into google; and I should have known that it’d provide lots of hits for the US TV conglomerate.  One story that came up on the search had to do with a twitter account called @LIPartyStories.  This was apparently a feed that would repost pictures sent from its teenage followers of themselves in various states of intoxication and déshabillé.  So far, so straightforward: the day that teenagers stop getting drunk and doing stupid things at parties is the day that the world will stop turning.  Granted, when I was young, we didn’t post stuff online – but if the internet had been around, we probably would have.  Kids do daft stuff; they sometimes regret it; then they grow up, and do daft stuff less.

Keith Albow, a Fox pundit, doesn’t see it quite like that: more…

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