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Back(wards) to the Future: The ethics of trading present health care for research

19 May, 14 | by David Hunter

Those outside of Australia are probably at best peripherally aware of the furore that the current budget announced by the new government last week is causing – it is in many ways an unsurprising budget for a broadly rightwing socially conservative government and quite reminiscent of the policies the Con-Dems have brought in the UK (attacks on public services, deregulation of higher education) against the background of a similar rhetoric of economic necessity and being all in it together, needing to clean up the mess left behind by the (kinda, almost, nominally) leftwing former government. It has managed thus far to reverse the popularity of the preferred leaders, and political parties so the fall out may be quite significant.

One interesting winkle it introduced was the introduction of a new medical research future fund (we are told ultimately it will be the largest in the world) which the majority of the significant cuts to public expenditure on health care would be channelled into and in particular of the new $7 co-payment that patients would be asked to pay to go to the GP(doctor) $5 would go to this new fund.

Obviously this is at least partially a cynical attempt to force the health cuts through the Senate (since if Labour votes against it as they say they will and succeed in stopping this policy then the Liberals can cast them as wanting the electorate to die of cancer…) sort of the equivalent of what is known as pork barrelling in the US.

And here you go a direct quote from the Minister for Health:
“People should understand that if they don’t want to put money into medical research then they can go down the obstructionist path of Labor and the Greens,”

Nonetheless there is an interesting question of whether this tradeoff is ethically acceptable? I wrote a little something about it here.

Unsurprisingly I think typically it won’t be because the cut backs to public health and new co-payments being imposed disproportionately disadvantage those worst off in society and the benefits will disproportionately accrue to those already well off – due to the cost of entry for new medical treatments, differing life expectancies and the likely focuses of medical research.

If the fund focused on disadvantage, health generally conceived and there was a guarantee that evidence generated would be listened to by government then it could be a force for good, but how likely is that?

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…

Athletic Sex

11 May, 14 | by Iain Brassington

There was an interesting article published in the BMJ a few days ago on the subject of athletes and their sex.  Here’s the opening gambit:

The International Olympic Committee (IOC) and international sports federations have recently introduced policies requiring medical investigation of women athletes known or suspected to have hyperandrogenism. Women who are found to have naturally high testosterone levels and tissue sensitivity are banned from competition unless they have surgical or pharmaceutical interventions to lower their testosterone levels.

The primary justification offered seems to be one of reducing unfair advantage, with a secondary justification that investigations of this sort might be to the medical advantage of the athletes themselves. Rebecca Jordan-Young and her colleagues aren’t impressed, and think that the policy is ethically suspect: not the least of their worries is that the policy effectively medicalises an unusual but benign characteristic of some people.  This could lead to medically useless surgery.  However, the potential problems are wider than that:

When pharmacological intervention or gonadectomy is a precondition for eligibility to compete, an athlete has to make a profound life and health altering decision for non-medical reasons. These are not merely individual decisions: athletes are embedded in families, teams, organisations, and even nations that depend on them to compete. Athletes can be “regarded as vulnerable to undue, even extreme situational pressures arising from the decision-making environment,” especially when a competitive career is also a path to economic mobility and stability.

I have to admit that I’m fairly relaxed about surgical interventions being undergone for non-medical reasons; more…

Rescuing the Duty to Rescue

1 May, 14 | by BMJ

Guest post by Tina Rulli and Joseph Millum

It is commonly thought that individuals have a moral duty to rescue others in peril. Bioethicists have leveraged this duty to rescue for a variety of purposes—including to criticize the use of placebo controls in trials in developing countries; to defend duties of researchers to return urgent incidental findings and provide ancillary care; to argue for a duty to become an organ donor; to defend allocating resources to develop drugs for rare diseases and to fund costly end of life care.

Despite their widespread use, there are serious problems with the two most cited duties to rescue: the individual duty of easy rescue and the institutional rule of rescue. The latter—the psychological tendency to support allocation of large amounts of money to rescuing identifiable victims at the opportunity cost of helping anonymous others—is indefensible.  (See Peter Singer’s opinion piece in the Washington Post criticizing donations to Make-a-Wish). The former can be defended, but has its own problems. One concerns its force: does it really apply only to very low-cost rescues? Consideration of physicians’ duties to warn suggests otherwise. Another problem concerns its scope: whom do I have to rescue? If it applies to everyone who needs rescue, even low-cost rescues may place enormous demands on individuals (cf Peter Singer’s famous essay: “Famine, Affluence, and Morality”).

We identify two further conceptions of the duty to rescue that have received less attention. An institutional duty of easy rescue would justify spending institutional dollars on rescue cases that are not too costly, while leaving room for institutions to fulfill lesser, but still important needs of others. A professional duty to rescue recognizes the more demanding duties certain medical professionals have. Both provide traction in answering some outstanding rescue dilemmas. We conclude our paper by proposing research priorities for bioethicists to help researchers and doctors sort through the obligations they have to people in need of medical rescue.

Read the full paper in the JME here.

Resurrectionism at Easter

23 Apr, 14 | by Iain Brassington

There’s a provocative piece in a recent New Scientist about what happens to unclaimed bodies after death – about, specifically, the practice of coopting them for research purposes.

Gareth Jones, who wrote it, points out that the practice has been going on for centuries – but that a consequence of the way it’s done is that it tends to be the poor and disenfranchised whose corpses are used:

[T]he probably unintended and unforeseen result [of most policies] was to make poverty the sole criterion for dissection. [... U]nclaimed bodies are still used in countries including South Africa, Nigeria, Bangladesh, Brazil and India. While their use is far less in North America, they continue to constitute the source of cadavers in around 20 per cent of medical schools in the US and Canada. In some states in the US, unclaimed bodies are passed to state anatomy boards.

For Jones, the practice of cooption ought to be stopped.  His main bone of contention is the lack of consent – it’s a problem that’s made more acute by the fact that the bodies of the disenfranchised are more likely to be unclaimed, but I take it that the basic concern would be there for all.

One question that we might want to ask right from the off is why informed consent is important. more…

This will hurt a bit

11 Apr, 14 | by David Hunter

In a piece titled in a fashion to simultaneously win the internet and cause every male reader to wince, Michelle Meyer asks “Whose Business Is It If You Want a Bee To Sting Your Penis? Should IRBs Be Policing Self-Experimentation?

In this piece she describes the case of a Cornell graduate student who carried out a piece of self-experimentation without IRB approval (based on the mistaken belief it wasn’t required) which aimed to assess which part of the body was worst to be stung by a bee on and involved:  “five stings a day, always between 9 and 10am, and always starting and ending with “test stings” on his forearm to calibrate the ratings. He kept this up for 38 days, stinging himself three times each on 25 different body parts.”

While IRB approval was required and not sought in this case, Meyer argues that this isn’t problematic effectively because in her view regulating researcher self experimentation constitutes an unacceptable level of paternalism:  “The question isn’t whether or not to try to deter unduly risky behavior by scientists who self-experiment; it’s whether this goal requires subjecting every instance of self-experimentation, no matter how risky, to mandatory, prospective review by a committee. It’s one thing to require a neutral third party to examine a protocol when there are information asymmetries between investigator and subject, and when the protocol’s risks are externalized onto subjects who may not share much or any of the expected benefits. Mandatory review of self-experimentation takes IRB paternalism to a whole other level.”

Perhaps this is just my inherent lack of a distaste for relatively benign paternalism but I don’t quite see this objection to regulating self experimentation working for three reasons.

Firstly the distinction Meyer draws between self and other experimentation assumes a high level of understanding of the risks and benefits on the behalf of the researcher in a way that negates the need for the normal consent process. This is probably right most of the time and so we can assume consent is present. Does this negate the need for external review? I am not sure it does since the researchers understanding is not perfect and they may be self deceiving in regards to the magnitude and level of risk. Meyer notes for example that this project originally involved stings to the eye, until the supervisor of this student pointed out that this risked blindness. So review by external experts regarding risks and benefits of research can and does reduce the levels of risks in research. In Research Exceptionalism James Wilson and I argue that this is a general justification for external research regulation – the ethics and risks and harms of research are complex and unpredictable and hence external regulation helps clarify these risks and ethical issues to enable researchers to fulfil their moral duties. This is of course paternalistic in the case of self-experimentation, but I presume that the student in this case is grateful to his supervisor for saving his vision, so I think it is the kind of paternalism we ought to endorse, since it is in regards to a risk that the person wouldn’t want to run.

Secondly valid consent, doesn’t just consist of having information, it also requires competency and particularly in these types of cases an absence of coercion. This is a graduate student who is to be frank in a vulnerable institutional position (like many of us in academia…) – if they want to improve their standing and move to the next level they need to keep their superiors happy. This makes them vulnerable to self exploitation and risk taking, which external regulation can reduce and remove.

Finally I suspect that what is going on here is a kind of reverse research exceptionalism where the regulation of research is seen as somehow more problematic than the regulation of other aspects of our lives. It is commonplace for health and safety to require us in the course of our employment to to act and not act in particular ways. This is both paternalistic insofar as it protects us, but it is also not paternalistic insofar as it protects both others and the instution we work at. In this case, this student is working in a lab in an institutional context and if something had gone wrong for the student or others in the course of this research then the institution could well have been held liable for damages arising from this. As such it seems perfectly within their rights to me to decide how to regulate these risks to them, and to decide to regulate these via prospective review.

Now as Meyer notes this is an external requirement rather than a choice that Cornell has made, but I don’t think this changes the justification for the regulation – given that we know in markets competition tends to drive towards failures to protect workers and others, there is nothing inappropriate with the state correcting the market failure here via legislation.

 

 

 

 

 

Twitter Speaks Truth

4 Apr, 14 | by Iain Brassington

I know I should be concentrating on my marking at the moment, but I’ve just seen this at the top of my twitter feed, and…

Screen shot 2014-04-04 at 16.19.41

I feel that it vindicates my little break.

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…

Multiplex Parenting: in vitro Gametogenesis and the Generations to Come

24 Mar, 14 | by BMJ

Guest Post by César Palacios-González, John Harris and Giuseppe Testa; for the full paper, click here.

Recent biotechnology breakthroughs suggest that functional human gametes could soon be created in vitro.  While the ethical debate on the uses of in vitro generated gametes (IVG) was originally constrained by the fact that they could be derived only from embryonic stem cell lines, the advent of induced Pluripotent Stem Cells (hiPSC) creates the possibility that somatic cells may be used to generate gametes.  This means that in the future it might be possible to generate human sperm and oocytes from male cells, and oocytes from female cells.  (So far it has not been possible to derive sperm from female cells.)

Among the different applications that have been explored in the academic literature, like the creation of embryos for genetic research and what has been called “in vitro eugenics”, we think that the most dramatic application of IVG will be in the field of human reproduction.  In a recent article in the Journal of Medical Ethics, Robert Sparrow rightly notices that IVG could allow post-puberty males who are unable to produce viable sperm, women who have undergone premature menopause, and those who have lost their gonads due to injury or had them removed in the course of cancer treatment to have genetically related kin.  To this list we add (and explore in our paper) a fourth use that has been overlooked until now: that IVG would allow the reparation of some of the harms done to people by means of biological involuntary sterilization. more…

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