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Should Anyone get IVF?

25 Nov, 14 | by Iain Brassington

Cast your mind back to this summer, and Christina Richie’s paper about the provision of ARTs.  It attracted a fair bit of controversy because of the way it talked about gay people’s rights to access ARTs, and their “voluntary” infertility.  For my money, that was the weakest part of the paper, and it should have been left out of the argument; the majority of the paper, and the more ethically interesting part, had to do with the environmental impact of striving to have more and more kids, irrespective of their parentage.  But I can see why the part about gay people struck many people as worth commenting on.

Why mention all that now?  Well, there’s a nice paper by Emily McTernan currently on pre-pub in the Journal of Applied Philosophy asking whether any fertility treatment should be state-funded.  In it, she asks whether IVF should be state-funded at all.  In a nutshell, her claim is that many of the arguments about the good of parenthood are either weak in their own right, or else could apply equally well to any number of other goods that a person might pursue.  Those that are weak are obviously less likely to sustain a claim that iVF should be provided; those that apply equally well to other goods obviously suggest either that governments should fund the pursuit of those other goods as well, or that if pursuit of those other goods is not funded, then neither should IVF be.  Thus

it is unjustifiable for a state to provide fertility treatment more generously than it funds other valuable like projects, both in the quantity of funding and the lack of means testing.

What I really like about the paper is that McTernan sets out the main arguments for funding in a simple but never simplistic manner, and calmly knocks them down one by one.  I’m already inclined to be suspicious of, if not hostile to, public funding of IVF (there being things with a more pressing need for public money, and genetic relatedness being not all that important), but she puts the arguments more neatly than I ever could.  She’s very good at pointing out that a particular argumentative strategy might be tempting, but that we would probably fight shy of adopting it because it would commit us to moral conclusions we wouldn’t normally want to embrace.  So, for example, if you’re inclined to agree with the Daniels line that adverse departures from normal species functioning could count as disease, you might be tempted to say that infertility is a disease – and therefore ought to be treated, or at least ameliorated, by IVF.  But

lack of reproductive success cannot itself suffice to make for an adverse departure [from the norm]: we would not want to conclude that those preferring same-sex partners have a disease, given the reproductive failure resulting from their statistically unusual sexual preference, let alone that it should be treated.

 

Elsewhere, she attacks the idea of parenting as a unique good as a ground for providing IVF, and the idea that we ought to support and enable reproduction as a social good.  McTernan recognises that there is arguably a social injustice in that a woman’s most fertile years tend to coincide with the years most crucial for her career.  This means that a woman who wants kids is likely to defer pregnancy, thereby reducing her chance of getting pregnant.  IVF might correct for that.  However, McTernan contends, this isn’t compelling, not least because the argument transforms a social phenomenon – which she thinks constitutes an injustice – into a problem with the individual; providing IVF (which isn’t all that reliable anyway) might provide an interim solution to the social problem, but it does nothing to address it fundamentally.  So, she claims, the argument probably isn’t all that strong.

But she then makes a fascinating exception – and this is where her paper is in interesting contrast to Richie’s: it’s that we do have more of a reason to provide IVF to gay couples. more…

Would Aristotle Vape?

13 Nov, 14 | by Iain Brassington

As I surfaced the other day, there was a discussion on Today about the marketing of e-cigarattes between Deborah Arnott, chief executive of ASH, and Lorien Jollye of the New Nicotine Alliance (now there‘s an organisation that wears its heart on its sleeve!).  It’s available from about the 1:22 mark here.  Having re-listened, it appears to me that they’re talking past each other for a significant amount of time; but the points around which they’re at least orbiting has to do with the safety of e-cigarettes and the permissibility of advertising for them.  Arnott’s concern is not so much about whether using e-cigs – which I believe the well-informed call “vaping” – can be shown in adverts, but how.  Jollye’s claim is that all that matters is whether and that the devices reduce levels of smoking across the board.  The subtext here is that the tone of the advertising possibly doesn’t matter – but if it does matter, and making the devices more attractive gets smokers to make the switch, then so much the better.

Arnott’s response here is that if e-cigs can lure smokers, they can presumably lure non-smokers, too.  And it does seem initially plausible that if the point is to coax smokers rather than non-smokers, it could be done in a non-glamorous way. emphasising the grimness of smoking-related illness and the relative benefits of vaping.  Glamour seems to be an attempt to be appealing to non-smokers as well.

Does that matter, though? more…

Growing a Kidney Inside a Pig Using your own DNA: The Ethics of ‘Chimera Organs’

6 Nov, 14 | by Iain Brassington

Guest post by David Shaw

Imagine that you’re in dire need of a new kidney. You’re near the top of the waiting list, but time is running out and you might not be lucky enough to receive a new organ from a deceased or living donor. But another option is now available: scientists could take some of your skin cells, and from them derive stem cells that can then be added to a pig embryo. Once that embryo is implanted and carried to term, the resulting pig will have a kidney that is a perfect genetic match to you, and the organ can be transplanted into your body within a few months without fear of immune rejection. Would you prefer to take the risk of waiting for an organ donated by a human, which would require you to take immunosuppressant drugs for the rest of your life? Or would you rather receive a “chimera organ”?

This scenario might seem far-fetched, but it is quite likely to be a clinical reality within a decade or so. Scientists have already used the same technique to grow rat organs inside mice, and it has also been shown to work in different types of pig. Although clinical trials in humans have not yet taken place, using these techniques to create human organs inside animals could solve the current organ scarcity problem by increasing supply of organs, saving thousands of lives each year in Europe alone. As illustrated in the example, organs created in this way could be tailored to the individual patient’s DNA, allowing transplantation without the risk of immune rejection. However, the prospect of growing organs of human origin within (non-human) animals raises several ethical issues, which we explore in our paper.

Although chimera organs are ‘personalised’ and unlikely to be rejected, one of the major concerns about using organs transplanted from animals is the risk of ‘zoonosis’ – the possibility that an animal virus might be transmitted along with the organ, resulting in a new disease that could cause a pandemic. more…

Once More unto the Breach of Covenant?

31 Oct, 14 | by Iain Brassington

The “Military Covenant” is in the news again:

The government is failing to abide by its military covenant, medical experts who treat injured soldiers have said.

Leading professors in psychology and orthopaedics say the healthcare system is not providing veterans with the service they have been promised. […]

The moral obligation to treat veterans should not stop when service ends, the covenant states, saying veterans should receive priority healthcare from the NHS when they are being treated for a condition dating from their time in the armed forces.

The Covenant is set out here; most of it is pretty vague, and what isn’t vague is largely predictable in its tone.  In respect of healthcare, the relevant part is on p 6:

The Armed Forces Community should enjoy the same standard of, and access to, healthcare as that received by any other UK citizen in the area they live. […]  Veterans receive their healthcare from the NHS, and should receive priority treatment where it relates to a condition which results from their service in the Armed Forces, subject to clinical need.

This, at first glance, seems to be saying that members of the forces, and ex-members, should be treated in the same way as everyone else, except that they shouldn’t.  (There’s a fuller version of the statement here.)  The Government repeats this confusing attitude elsewhere: its own website explains that

[i]t’s not about getting special treatment that ordinary citizens wouldn’t receive, or getting a better result. For those that have given the most, such as the injured and the bereaved, we do make an exception

But maybe that’s just a terminological infelicity.

The Covenant itself does not have the status of law (and even if it did, that wouldn’t make any moral difference, unless you happen to think that all law is de facto good law).  However, the Armed Forces Act (2011) does state that the Secretary of State must prepare and present before Parliament every year a report on the covenant; and, according to §343A(3), more…

Saatchi Bill – Update

28 Oct, 14 | by Iain Brassington

Damn. Damn, damn, damn.

It turns out that the version of the Medical Innovation Bill about which I wrote this morning isn’t the most recent: the most recent version is available here.  Naïvely, I’d assumed that the government would make sure the latest version was the easiest to find.  Silly me.

Here’s the updated version of §1(3): it says that the process of deciding whether to use an unorthodox treatment

must include—

(a) consultation with appropriately qualified colleagues, including any relevant multi-disciplinary team;

(b) notification in advance to the doctor’s responsible officer;

(c) consideration of any opinions or requests expressed by or on behalf of the patient;

(d) obtaining any consents required by law; and

(e) consideration of all matters that appear to the doctor to be reasonably necessary to be considered in order to reach a clinical judgment, including assessment and comparison of the actual or probable risks and consequences of different treatments.

So it is a bit better – it seems to take out the explicit “ask your mates” line.

However, it still doesn’t say how medics ought to weigh these criteria, or what counts as an appropriately qualified colleague.  So, on the face of it, our homeopath-oncologist could go to a “qualified” homeopath.  Or he could go to an oncologist, get told he’s a nutter, make a mental note of that, and decide that that’s quite enough consultation and that he’s still happy to try homeopathy anyway.

So it’s still a crappy piece of legislation.  And it still enjoys government support.  Which does, I suppose, give me an excuse to post this:

Many thanks to Sofia for the gentle correction about the law.

An Innovation Too Far?

28 Oct, 14 | by Iain Brassington

NB – Update/ erratum here.  Ooops.

One of the things I’ve been doing since I last posted here has involved me looking at the Medical Innovation Bill – the so-called “Saatchi Bill”, after its titular sponsor.  Partly, I got interested out of necessity – Radio 4 invited me to go on to the Sunday programme to talk about it, and so I had to do some reading up pretty quickly.  (It wasn’t a classic performance, I admit; I wasn’t on top form, and it was live.  Noone swore, and noone died, but that’s about the best that can be said.)

It’s easy to see the appeal of the Bill: drugs can take ages to come to market, and off-label use can take a hell of a long time to get approval, and all the rest of it – and all the while, people are suffering and/ or dying.  It’s reasonable enough to want to do something to ameliorate the situation; and if there’s anecdotal evidence that something might work, or if a medic has a brainwave suggesting that drug D might prove useful for condition C – well, given all that, it’s perfectly understandable why we might want the law to provide some protection to said medic.  The sum of human knowledge will grow, people will get better, and it’s raindrops on roses and whiskers on kittens all the way; the Government seems satisfied that all’s well.  Accordingly, the Bill sets out to “encourage responsible innovation in medical treatment (and accordingly to deter innovation which is not responsible)” – that’s from §1(1) – and it’s main point is, according to §1(2), to ensure that

It is not negligent for a doctor to depart from the existing range of accepted medical treatments for a condition, in the circumstances set out in subsection (3), if the decision to do so is taken responsibly.

Accordingly, §1(3) outlines that

[t]hose circumstances are where, in the doctor’s opinion—

(a) it is unclear whether the medical treatment that the doctor proposes to carry out has or would have the support of a responsible body of medical opinion, or

(b) the proposed treatment does not or would not have such support.

So far so good.  Time to break out the bright copper kettles and warm woollen mittens*, then?  Not so fast. more…

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.

Paper Preview: Implementation of a Consent for Chart Review and Contact

23 Sep, 14 | by BMJ

Guest post by Irena Druce
Our article “Implementation of a Consent for Chart Review and Contact and its Impact in one Clinical Centre” focuses on issues regarding patient health information privacy and recruitment for medical research studies.  Research studies are an integral part of the advancement of medical therapies; however, recruitment into research studies can be challenging.  In Canada, the use of health information is governed by Personal Health Information Protection Act and at our institution a policy is in place that allows only those health professionals directly in the circle of care access to patient information to further protect patient’s privacy.  This policy could have a potential negative effect on recruitment rates into research studies.  Physicians and other clinical personnel often do not have the time to discuss ongoing research projects with patients as time is spent focusing on the patient’s medical issues.  In addition, there is concern that if  physicians use the information that they gather in a clinical encounter to recruit for research studies, it is equivalent to that physician sharing medical information  with someone who does not have a right to it.

In light of these challenges, the Division of Metabolism and Endocrinology at the University of Ottawa implemented a consent for chart review and contact (CCRC).  The CCRC is a document presented to a patient on their first meeting a new physician.  The CCRC gives permission for the patient’s medical file to be reviewed by research personnel to determine whether a patient is eligible for a research study.  If the patient meets the study criteria, the CCRC also grants permission for the patient to be contacted by research personnel to be provided with the details of the research study so they can decide if they wish to participate.

It has been proposed that patients may feel pressured to agree if a  CCRC is presented on their first meeting a new health professional.   Patients may feel that refusing the CCRC would affect the future care they receive.  Our  paper discusses how we have addressed this possible pitfalls with our CCRC document.

In addition, we performed an analysis to assess the impact the CCRC was having at our institution.  We compared the basic demographics of the patients who did and did not agree to the CCRC.  Furthermore, we analysed our centre’s recruitment rate into a known, ongoing, multi-centre, international trial.  Of the participating centres, we found that our institution had some of the highest recruitment rates into the trial, and that the majority of our patients were being recruited via our novel approach of the CCRC.  It is not certain that the use of a CCRC would consistently translate into higher recruitment, but certainly our experience has been encouraging.  Data suggest that participation in research trials has been decreasing in recent years.  Any measure to preserve recruitment may be beneficial, especially a measure which allows for the conduction of research, without having to sacrifice any patient rights with regards to privacy and confidentiality.

Read the paper here.

 

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Posted in clinical ethics, Guest Post, JME

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

 

 

 

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Film Review: “Obvious Child”

3 Sep, 14 | by Iain Brassington

We’ve not had a film review here before, have we?  OC-poster-screenshot-121013

As far as I can tell, the ratio of talked-about-ness to actual screenings of Obvious Child is unusually high; it doesn’t seem to have got all that much time in mainstream cinemas, which meant that I had to schlep along to Manchester’s Cornerhouse to see it.  (I have a theory about cinemas, which is that the artistic quality of the establishment is inversely proportional to the comfort of the seating.  The Cornerhouse is a nice example of this rule in action.)  Why it’s attracted so much attention is captured in the elevator pitch: it’s a romantic comedy about abortion.  It certainly got certain elements of the US commentariat all excited – RightWingWatch has a nice little compilation here – though admittedly, as far as I can tell, the objections haven’t been matched in the UK, where the emphasis has been much more along the lines of “It’s that film that got the American right all antsy”.

I can see why certain sectors of the commentariat have got upset about it; the film is remarkable in just how down-to-earth its handling of the plot is.  The plot is dead simple: a woman (Donna, played by Jenny Slate) loses her boyfriend and her job within the space of about three frames, gets drunk, has a one-night-stand, gets pregnant, decides to have an abortion, lets the father of the child know all this in the course of a stand-up routine, has that abortion, then decides to watch Gone with the Wind.  It’s that straightforward.

For Donna, it’s less a matter of obvious children than obvious decisions.  She doesn’t want to be pregnant, and sets about not being.  There’s no indication that she’ll regret the decision; there’re no lingering shots of Donna agonising over whether it’s the right thing to do; the father (Max, played by Jake Lacy) says he wants to be a grandfather in passing, but doesn’t try to talk her out of it, or even insist that he should have a say.  Donna is a little nervous about the procedure – but then, it makes sense to be a little nervous about having a mole removed or any other minor surgery.  There’s no moral freight, though.  Donna is not irresponsible – I mean, she might have done something a bit irresponsible in not taking more care with the contraception, but that’s a shared thing with Max; and making a decision about what to do in the wake of having done something a bit daft is responsible.

In other words, Obvious Child is just about a person making a decision. more…

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