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Re: Nudges in a Post-truth World 

19 Jul, 17 | by bearp

Guest Post: Nathan Hodson 

In a recent article in the Journal of Medical Ethics, Neil Levy has developed a concept of “nudges to reason,” offering a new tool for those trying to reconcile medical ethics with the application of behavioural psychological research – a practice known as nudging. Very roughly, nudging means adjusting the way choices are presented to the public in order to promote certain decisions.

As Levy notes, some people are concerned that nudges present a threat to autonomy. Attempts at reconciling nudges with ethics, then, are important because nudging in healthcare is here to stay but we need to ensure it is used in ways that respect autonomy (and other moral principles).

The term “nudge” is perhaps a misnomer. To fill out the concept a bit, it commonly denotes the use of behavioural economics and behavioural psychology to the construction of choice architecture through carefully designed trials. But every choice we face, in any context, already comes with a choice architecture: there are endless contextual factors that impact the decisions we make.

When we ask whether nudging is acceptable we are asking whether an arbitrary or random choice architecture is more acceptable than a deliberate choice architecture, or whether an uninformed choice architecture is better than one informed by research.

In fact the permissibility of a nudge derives from whether it is being used in an ethically acceptable way, something that can only be explored on an individual basis. Thaler and Sunstein locate ethical acceptability in promoting the health of the person being nudged (and call this Libertarian Paternalism — i.e. sensible choices are promoted but no option is foreclosed). An alternative approach was proposed by Mitchell: nudges are justified if they maximise future liberty. Either way the nudging itself is not inherently problematic.

Detailing the relevant psychological research, Levy outlines how our responses to new information are influenced by our understanding of the source. Does the source stand to benefit from persuading us? Does the source wish us good or ill? These are classified as Messenger factors in the Behavioural Insights Team’s1 MINDSPACE classification.

Levy goes on to show how sensitivity to these factors makes evolutionary sense and as such constitutes part of our subconscious reasoning. Nudges that promote appropriate sensitivity to the factors, then, do not subvert our rationality; they apply or appeal directly to it.

There is huge scope within Levy’s grouping of nudges for interventions that do not threaten autonomy. For example the “N” in MINDSPACE stands for “norms.” An attuned sensitivity to group norms is adaptive in the same way as are messenger factors. But there is another group of nudges that actively promote autonomy.

The challenges to healthcare and wider society in this purportedly post-truth era demand improved quality of public debate and individual deliberation, and nudges can help. Building on Mitchell’s notion that nudges can be good if they increase future liberty and taking a rich conception of autonomy maximised through reflection and rationality, we could conceive of nudge-based policies which maximise current autonomy.  more…

Charlie Gard and the Ethics Commentator

18 Jul, 17 | by miriamwood

Guest Post: Daniel Sokol

‘Best interest’ cases, such as the Charlie Gard case, are fundamentally about medical ethics, although they are determined by a single judge in a court of law.

At the hearing last week, there were at least 4 express references to medical ethics.

The first appeared in the hospital’s “position statement”, drafted by Leading Counsel, Katie Gollop QC:

As to the disagreements [between the parents and the hospital], one is a difference of opinion about the risks, benefits and ethics of providing our compound nucleoside treatment for Charlie after a time when his brain had become profoundly affected by his genetic disease.”

The second was a reference to the Hippocratic Oath: Counsel for the parents stated that the decision to offer the proposed experimental treatment would be consistent with the Hippocratic Oath.  I discuss this – and my current view on the case – in an article for the British Medical Journal.

The third was the mention by the parents’ barrister of a bioethicist, whose article was included in the family’s file of evidence to the Court.

The fourth was the decision to appoint a clinical ethicist to chair a Multidisciplinary Team meeting on Monday 17th July 2017.

It is no surprise, therefore, that ethicists have commented on the case.  As the court is not expected to make a decision until 25th July, and as we enter a quiet season for the media, many more commentaries will follow.

more…

 Guest Post: Withdrawing Life-Prolonging Treatment in the Patient’s Best Interests: The Implications of Briggs

14 Jul, 17 | by miriamwood

Guest Post: Jenny Kitzinger, Celia Kitzinger and Jakki Cowley

Paper:  When ‘Sanctity of Life’ and ‘Self-Determination’ clash

In a recent landmark judgment in the Court of Protection (Briggs v Briggs [2016] EWCOP 53), a judge authorised withdrawal of life-prolonging treatment from a minimally conscious patient with potential for further recovery.  Our article in the Journal of Medical Ethics addresses the implications of this judgment, highlighting its potential to strengthen compliance with the Mental Capacity Act 2005, and the delivery of person-centred care.

How this will work in practice is another question.

We have supported families (CK and JK) and represented patients (JC) in a series of cases – several of which have reached court – in which families sought treatment withdrawal and doctors refused.  We know many families who believe that their brain-injured relative would not want to receive on-going life-prolonging interventions. It usually takes years for families to come to this view and even longer to communicate it to doctors. Some health care professionals can be dismissive – or even hostile – when families speak up.   Even when doctors acknowledge that a patient will never regain consciousness, some have ethical objections to withdrawing treatment from a clinically stable patient.  It feels, they say, like ‘euthanasia’.

more…

Is Hope a Virtue?

13 Jul, 17 | by Iain Brassington

It’s perfectly understandable that hope should have featured so prominently in the coverage of the Charlie Gard case; each proposal is presented as offering fresh hope, each reversal presented as dashing hopes.  In either case, hope is something presented as desirable.  A bit more deeply, hope is one of the Theological Virtues, and so anyone who has grown up in the West, irrespective of their doctrinal commitments, will come from a culture in which there’s an overwhelming sense of hope being something good.  For some, it may even be an unalloyed good – I’ll return to that in a moment.

Indeed, it’s hard to imagine a culture in which hope is not fairly straightforwardly desirable: in which, that is, hope’s desirability is the exception rather than the rule.

Hard, but not impossible.

Here’s Hesiod, telling the story of Pandora in Works and Days (from Dorothea Wender’s translation for Penguin):

Before this time men lived upon the earth
Apart from sorrow and painful work,
Free from disease, which lets the Death-gods in.
But now the woman opened up the cask,
And scattered pains and evils among men.
Inside the cask’s hard walls remained one thing,
Hope, only, which did not fly through the door.
The lid stopped her, but all the others flew,
Thousands of troubles, wandering the earth.
The earth is full of evils, and the sea.
Diseases come to visit men by day
And, uninvited, come again at night
Bringing their pains in silence, for they were
Deprived of speech by Zeus the Wise.  And so
There is no way to flee the mind of Zeus.

Hesiod is ambiguous about hope here.  Was it placed in the cask by Zeus as a sort of remedy for all the other evils?  That’s the interpretation of the story to which I was exposed as a 10-year-old.  It’s plausibly quite a Christianised reading, with Hope as the consolation for the cares of the world, and a shield against despair.  That might have been how some contemporary Greeks took the story, too.  But there’s nothing in the text to indicate that it’s the correct interpretation; it does seem to be something we’d have to infer based on an assumption that Hope is good, and Hesiod offers no grounds for that assumption.  And there’d be puzzles left to solve for this interpretation to work.  Why would Zeus, intent on making humanity suffer, provide an antidote to suffering?  Well, maybe he had a change of heart.  But that seems implausible, since hope was sent with all the evils of the world.  A change of heart would be better expressed by not sending the evils – or not quite so many of them – in the first place.

Might Hope itself have been one of the evils sent by Zeus, then?  That’s be perplexing to a modern audience, but that counts for little; Hesiod was alive at roughly the same time as Homer, in the seventh or eighth century BC, so there’s plenty of time for all kinds of cultural contortions.  Maybe Hesiod’s audience was one in which hope had undesirable connotations.

But why should hope be seen as evil?  Well, Nietzsche has an answer to that in §71 of Human, all too Human: more…

Never Let an Ill Child Go to Waste

7 Jul, 17 | by Iain Brassington

The Charlie Gard saga is one about which I’ve been reluctant to say anything, not least because plenty of other people have said plenty elsewhere.  Sometimes they add heat, and sometimes they add light.

Beneath everything, the story is fairly simple: a small child is terribly ill; it is agreed by medical opinion that continued treatment is not only not in his best interests but would cause him positive harm; the courts have determined that the withdrawal of treatment is warranted.  One sympathises with his parents’ fight to keep treatment going – but it does not follow from that that their opinions should be determinative.  Indeed, the courts having decided that Charlie’s treatment should not be withdrawn immediately in order to allow his parents more time with him risks making the case about them, rather than about him.  If treatment is not medically warranted and actually is harmful, there may be something worrisome about continuing it anyway for the sake of his parents.  Their distress is not going to lessened by prolonging the child’s treatment, and even if it were, it is not the proper focus here.

So that’s my hot take on the story itself.  I don’t think it’s anything too radical.  Yet the coverage of the case has been, in places, something of a trainwreck.  Take, for example, this piece from the Chicago Tribune (with thanks to Charles Erin for the pointer).  It’s fascinating for just how much it manages to get wrong, and how mawkish it is, and for what it does with the story to such unpleasant ends.

Charlie’s parents, Connie Yates and Chris Gard, are fighting to bring their son to the U.S. for experimental treatment. They’ve raised $1.7 million on a crowdfunding website to do so.

But Charlie’s doctors, and the British courts, won’t let him go. Medical authorities argue that prolonging his life by keeping him on a ventilator could cause him pain. British authorities won’t even let the parents take him home to die.

Well, yes and no.  I mean, it’s true that Charlie won’t be travelling abroad for treatment, but the tone here is deeply misleading: it’s presented as a kind of custody battle, and it’s no such thing.  It’s about what’s in Charlie’s best interests.  “The authorities aren’t even letting him go home to die” is arguably a rather mendacious way of saying “Charlie really needs the kind of care that can’t be provided at home”.

The article continues: more…

Editor-in-Chief Journal of Medical Ethics

5 Jul, 17 | by Kelly Horwood, BMJ

The Institute of Medical Ethics and BMJ are looking for the next Editor-in-Chief who can continue to shape the Journal of Medical Ethics into a dynamic resource for a rapidly evolving field. Candidates should be active in the field, keen to facilitate international perspectives and maintain an awareness of trends and hot topics. The successful candidate will act as an ambassador for the journal supporting both pioneering authors and academics publishing their first papers. The candidate will also actively promote and strengthen the journal whilst upholding the highest ethical standards of professional practice. The editor will work with IME to promote research and scholarship in medical ethics and attend IME board meetings regularly.

International and joint applications are welcomed. Interviews will be held in December 2017. Term of office is five years; the role will take 12-15 hours a week. Contact Richard Sands (rsands@bmj.com) for more information and to apply with your CV and cover letter outlining your interest and your vision for the future development of the journal.

Application deadline: 31 October 2017; Interviews: December 2017

Start date: 1 June 2018 (handover from February 2018)

more…

Not Just About Consent: The Ethical Dimensions of Research Methodology Knowledge in IRBs

15 Jun, 17 | by bearp

Guest Post: Sarah Wieten

The recent article, “Some Social Scientists Are Tired of Asking for Permission” in the New York Times inspired a great deal of debate about the role of institutional research ethics board (IRB) oversight in social science, which some argue is in most cases unlikely to involve significant harm to participants.

While the role IRBs play in sociological research is being re-examined, the importance of IRB oversight for medical research was not similarly called into question. But what exactly does IRB oversight in medical research involve? Should these groups be content with assuring that patients and participants in medical research have provided informed consent? Or do they have wider duties? What is the relationship between methodologically rigorous science and ethical science?

The approval of research projects by IRBs is an integral part of the conduct of research in universities. IRBs ensure that all research follows key ethical guidelines and is pursued for good reason, and in doing so, they aim to keep patients and participants out of harm’s way. IRBs are important gatekeepers of institutional research, and serve as a check on the work of scientists, physicians, and others who are pursuing new knowledge.

We would assume then, that people serving on IRBs have a clear understanding of relevant research design. That way, they can check the research for ethical issues stemming from the methodology. They can also make sure that methodologically poor studies do not proceed, as this would be an unethical waste of resources (and would put participants at risk without a reasonable prospect of gaining reliable knowledge in exchange).

more…

“NOW’s interest in pharmaceutical gender equity seems to have disappeared with its funding.”

15 Jun, 17 | by Iain Brassington

There’s a remarkable piece on the Hastings Center’s blog by Alycia Hogenmiller about a drug called Addyi.  Addyi is a drug that doesn’t work to treat a condition that doesn’t exist, pushed by campaigners who are actually industry shills.

Sprout Pharmaceuticals, run by Cindy and Robert Whitehead, was determined to obtain regulatory approval for flibanserin (Addyi), an antidepressant-turned-aphrodisiac that had already twice failed to gain approval by the FDA.  To create this fake feminist campaign, Sprout hired Blue Engine Media, a PR firm that created a sham organization called Even the Score. The campaign hired two feminists: a former director of the FDA Office of Women’s Health, and the former president of the Women’s Research and Education Institute – both well-known to women’s groups.  Even the Score recruited and paid consumer advocacy groups to pressure the FDA into approving flibanserin for Hypoactive Sexual Desire Disorder – a condition previously created by industry to sell another drug.

I want to know more about those people hired.  What were they thinking?  What did they think they were doing?  What weren’t they thinking?

It’s sad to see advocacy groups become mouthpieces for pharma.  It is even sadder when those mouthpieces are feminist groups that should be protecting the interest of women but instead are protecting a company’s bottom line.  Every single one of the advocacy groups that don’t take money from pharmaceutical companies opposed Addyi’s approval and use.  For example, the National Women’s Health Network, the Jacobs Institute for Women’s Health, the National Center for Health Research, the Reproductive Health Technologies Project, and the New View campaign all publicly opposed the drug before and after approval.  “This decision to approve flibanserin is a triumph of marketing over science,” said Cindy Pearson, head of the National Women’s Health Network.

[…]

Addyi was never a true symbol for gender equity.  The drug doesn’t work well and was never safe.

Just roll back a bit…

Every single one of the advocacy groups that don’t take money from pharmaceutical companies opposed Addyi’s approval and use.

Whoa.

Several lessons can be learned from the story of Even the Score.  First, don’t trust, support, or listen to purported consumer advocacy groups that take money from pharmaceutical companies.

D’ya reckon?

Go and read the whole thing.  It’s astonishing.

The conference in respect of which the post is written looks good, too.

What’s the Point of Professional Ethical Codes?

13 Jun, 17 | by Iain Brassington

For a few reasons, I’ve been thinking a bit over the last few months about professionalism and professional codes.  In fact, that’s the topic that’s attracted most of my attention here since… oooh, ages ago.  I find the idea of a code of professional ethics troubling in many ways, but also fascinating.  And one of the fascinating questions has to do with what they’re for.

They can’t be meant as a particularly useful tool for solving deep moral dilemmas: they’re much too blunt for that, often presuppose too much, and tend to bend to suit the law.  To think that because the relevant professional code enjoins x it follows that x is permissible or right smacks of a simple appeal to authority, and this flies in the face of what it is to be a moral agent in the first place.  But what a professional code of ethics may do is to provide a certain kind of Bolamesque legal defence: if your having done φ attracts a claim that it’s negligent or unreasonable or something like that, being able to point out that your professional body endorses φ-ing will help you out.  But professional ethics, and what counts as professional discipline, stretches way beyond that.  For example, instances of workplace bullying can be matters of great professional and ethical import, but it’s not at all obvious that the law should be involved.

There’s a range of reasons why someone’s behaviour might be of professional ethical concern.  Perhaps the most obvious is a concern for public protection.  If someone has been found to have behaved in a way that endangers third parties, then the profession may well want to intervene.  For example: if an HCP knew herself to be a carrier of a transmissible disease but did nothing about it, this would quite plausibly be a matter for professional concern, irrespective of what the law says, or whether anyone had been harmed.  The same would apply if we discovered that a surgeon was unable to function without a large brandy to settle his nerves.  But we’d want to make sure that the professional concern was for the right thing.  It would be inappropriate to sanction someone merely for being a carrier, or for being alcohol dependent.  (Along these lines, it seems defensible to me not to have suspended Martin Royle, a surgeon who falsified prescriptions in order to satisfy his addiction to painkillers.  It’s better to treat an addiction than to punish it.)

A second reason is for the sake of collegiality.  For example, there’s nothing illegal about being  a racist, and there probably shouldn’t be; but it is at the very best distasteful.  Imagine you discover that your colleague is an abiding racist.  It is not hard to see how this knowledge might have implications for your professional interactions – especially (but not only) if you’re a member of one of the groups to which your colleague has a demeaning attitude.  (Indeed, the same might be true if he had used to be a racist, but had changed his attitudes.  I suspect that that’s the sort of thing that might have a fairly long half-life.)  Now imagine that your colleague is a frequent attendee at rallies, held in support of racist policies, that are often associated with threatening behaviour: he doesn’t just dislike some people, but is visibly hostile to them.  That, it seems to me, might be a matter of professional concern, because it will predictably make the working environment much more difficult.  It would be harder to trust this colleague (again, especially but not only if you happen to be a member of one of the groups he hates).  That might be sufficient to raise worries about whether he’s a fit person to do the job in question.  Again, though, there’d have to be a proviso: there is a difference between one’s professional abilities and one’s personal attitudes, and between how one behaves in and out of work.  A surgeon is a surgeon for all that.  So there is a genuine problem here concerning what to do.  But a genuine problem means that there is a cause for concern.

(Indirectly, this second concern might have something to do with public safety, too.  A surgical team in which people are uncomfortable working along side each other may be one in which patient outcomes are affected.  But that would be a further matter, and would not have to collapse into the safety point.  Imagine that the profession is accountancy: it might still be that members of the group would simply be intolerably uncomfortable working alongside their racist colleague, although the audit will still be done perfectly well.  The same will apply in any profession.)

But there’s another factor, which is the status of the profession.  To what extent are professional ethics codes and bodies that judge professionalism in the business of protecting themselves and their high social status?  A couple of recent cases raises that question. more…

No Pain, All Gain: The Case for Farming Organs in Brainless Humans

10 Jun, 17 | by Iain Brassington

Guest post by Ruth Stirton, University of Sussex (@RuthStirton) and David Lawrence, Newcastle University (@Biojammer)

It is widely acknowledged that there is a nationwide shortage of organs for transplantation purposes.  In 2016, 400 people died whilst on the organ waiting list.  Asking for donors is not working fast enough.  We should explore all avenues to alleviate this problem, which must include considering options that appear distasteful.  As the world gets safer, and fewer young people die in circumstances conducive to the donation of their organs, there is only so much that increased efficiency in collection (through improved procedures and storage) can do to increase the number of human organs available for transplantation. Xenotransplantation – the transplantation of animal organs into humans – gives us the possibility of saving lives that we would certainly lose otherwise.

There are major scientific hurdles in the way of transplanting whole animal organs into humans, including significant potential problems with incompatibility and consequent rejection.  There is, however, useful similarity between human and pig cells, which means that using pigs as the source of organs is the most likely to be viable.  Assuming, for the moment, that we can solve the scientific challenges with doing so, the bigger issue is the question of whether we should engage in xenotransplantation.

A significant challenge to this practice is that it is probably unethical to use an animal in this way for the benefit of humans. more…

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