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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…

Testing, testing…

24 Mar, 14 | by Iain Brassington

So, yeah.

It’s been a bit quiet here, hasn’t it?

There’s been a range of reasons.  Mainly, it’s had to do with David and I both having to do (whisper it) real w*rk, and that’s got in the way.

And then WordPress went a bit odd, which made it impossible to post anything.  (Part of the reason for this post is to confirm that I can publish something.)

And something else, too, from my personal perspective: I’ve been blogging here since 2008, and it’s hard to stay grumpy for that long.  Even for me.  So think of recent quietness as a sabbatical.  I think my grumpiness is recharged now, though.  So there’ll be a guest post going up soon, and then – I hope – back to something like normal from me.

Hello, hello; it’s good to be back.  I’d post a link to a vid for that, too, except for the unfortunate associations with Gary Gli…  Wait: what?  The Glitter Band is still touring?  Good grief.  Well, if they can keep going, I have no excuse, do I?

Still can’t embed videos, though…

What should we Think about Belgium’s Child Euthanasia Law?

15 Feb, 14 | by Iain Brassington

With any luck, the nuts real-world work schedule of the past few months* will begin to ease in a few days, so I should be able to start blogging more frequently soon; but I thought I’d take a moment out from writing jurisprudence lectures to do some thinking out loud about Belgium’s recent change to its euthanasia law, which legalises it for children.  This is partly because it’s interesting in its own right, and partly because I’m debating it on Radio 4’s Sunday programme this week.  I’ve drafted this post before the interview’s recorded, but I’m not publishing it until after (though before the broadcast); let’s see how my thoughts here pan out on air…**

For reference, the text of the law is available here in French, and here in Dutch – thank goodness for A/S levels.  A decent précis provided by AP is hosted here; and Christian Munthe has an unofficial translation here.

OK: so, what should we think about it? more…

The Definition of Mental Disorder: Evolving but Dysfunctional?

12 Feb, 14 | by Iain Brassington

Guest post by Rachel Bingham

In 1973 the American Psychiatric Association removed homosexuality from the official classification of ‘mental disorders’.  This was the result of a successful public campaign and changing political views.  Yet, if homosexuality could be (wrongly) diagnosed as a mental disorder – using an official classification – what does this say about the other states that remain in the classification?  How can we be sure that other states are not being labeled as mental disorders solely due to discrimination and stigma?

One way to respond to these concerns is to offer a definition of mental disorder, aiming to capture all and only genuine mental illness.  Unfortunately, this has proved exceptionally difficult to do.  Definitions that rely only on ‘facts’ – information about the brain, the genes, and so on – do not tell us whether or not a condition is really an illness.  They simply tell us about the underlying biology once we already recognize an illness to be present.  For example, finding differences in the brains of people who are criminals or of people who have recently fallen in love would not prove these states to be “illnesses”; it would only show that different states of being are reflected differently in the brain.  It is widely acknowledged that defining mental disorder requires some sort of value judgment – that is, recognition that the state in question is undesirable or harmful.  But once we bring value judgments into play concerns about social discrimination are amplified.  Might other states be wrongfully diagnosed solely because of social or political dimensions that have not yet been recognized for what they are?  If value judgments are permitted to define disorder, do we risk repeating a history of wrongful psychiatric diagnosis?  These questions are explored at greater length in the full paper in the JME, available here.

Medical Information for Sale?

21 Jan, 14 | by Iain Brassington

Reader Keith emailed me a week or so ago to tip me off about the government’s plans to allow private firms to access medical information.  It’s a story that has subsequently been picked up by  - inter alia - The Guardian.

As with the last post I made here, I’m going to have to cry off from saying much in my own right – I’ve got lectures that need to be written, and I need at least to go through the motions of being competent – but I would draw your attention the Christian Munthe’s take on the matter.

Touch wood, I’ll be able to get back to more frequent blogging soon.

Sex-Selection and Abortion: Is there a Problem?

17 Jan, 14 | by Iain Brassington

This is just a quick post, and it’s mainly to draw your attention to a couple of other posts worth reading elsewhere.

A little background: there’s been a minor fuss* in the media over the last few days concerning sex-specific abortion**, after The Independent reported that

[t]he practice of sex-selective abortion is now so commonplace that it has affected the natural 50:50 balance of boys to girls within some immigrant groups and has led to the “disappearance” of between 1,400 and 4,700 females from the national census records of England and Wales, we can reveal.

Now, there’s something a bit fishy about the article even on its own terms: alarm bells should be got ringing by this:

[O]ur deeper statistical analysis of data from the 2011 National Census has shown widespread discrepancies in the sex ratio of children in some immigrant families, which can only be easily explained by women choosing to abort female foetuses in the hope of becoming quickly pregnant again with a boy.

After all, it does seem to reduce to a claim along the lines that “I can’t think of a better explanation than e for phenomenon p, therefore e obtains” – but that tells us far more about the limits of the speaker’s imagination than about the state of the world.  Besides, while there are good reasons to favour the most simple explanation of p, one ought to keep a distinction between the simple and the simplistic.  Bluntly, an easy explanation isn’t any more likely to be true by dint of being easy.  E=mc2 is simple once you’ve derived it, but its derivation isn’t easy.

But how reliable is the Indy‘s analysis anyway?  I’ve not gone through the data myself, but Unity has, and has a couple of really good posts: the first is here, and the followup is here.

They’re very worth the read – but I recommend that you make yourself a good cup of tea before starting them.  They’re looooooong.  I’d be interested to know what others think, though.

 

UPDATE: There’s even more.  I think Unity’s enjoying himself with this.

 

* Minor in the sense that it’s been eclipsed by things like Oscar nominations.

** Here’s Christina Odone, for example, blaming it all on feminism.  Surprised?  You could knock me down with a bulldozer.

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