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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…

Appealing to the Crowd: Ethical Justifications in Canadian Medical Crowdfunding Campaigns

8 Jun, 17 | by miriamwood

Guest Post: Jeremy Snyder
Paper:Appealing to the crowd: ethical justifications in Canadian medical crowdfunding campaigns

Medical crowdfunding is a practice where users take advantage of the power of social networks to raise funds related to medical needs from friends, family, and strangers by sharing fundraising appeals online. Popular venues include GiveForward, GoFundMe, and YouCaring, among others. This practice appears to be growing in terms of the number of active campaigns, the amount of money raised, and its visibility. An analysis of five crowdfunding sites found that in 2015 41% of all fundraising campaigns were for medical needs.

Medical crowdfunding has not received a great deal of scrutiny from ethicists or other academics. We are interested in a number of questions related to medical crowdfunding, including determining what reasons are given by campaigners for potential donors to contribute to their campaigns. In order to answer this question, we recorded and analyzed the language used in 80 medical crowdfunding campaigns, focusing on campaigns by Canadians.

We found that the reasons given for donating can be broken into three groups. First, campaigners used personal appeals to encourage giving, focusing their attention on friends and family members who already knew the recipient. This personal connection to the recipient was often framed as creating a reason to give, such as that “we should gather around them as one big family and help as much as possible.” These appeals can be linked to the ethics of care and relational ethics. Second, the depth of the recipient’s need and resulting positive impact of donations were framed as creating reasons to give. These arguments echo justifications found in the duty of beneficence and utilitarian thinking. Finally, campaigners argued that donors should contribute as a way of giving back to recipients who had helped others. These campaigns made the point that the recipient’s generosity created a community debt where “now it’s our turn to help.” In this way, the values of fairness and reciprocity were represented in these campaigns.

more…

A Plutocratic Proposal: An Ethical Way for Rich Patients to Pay for a Place on a Clinical Trial

8 Jun, 17 | by miriamwood

Guest Post: Alexander Masters and Dominic Nutt
Paper: A Plutocratic Proposal: an ethical way for rich patients to pay for a place on a clinical trial

Is it ethically possible to fund a clinical trial by charging the participants?  We believe we have discovered a way to do it.  Our suggested method has, as far as we know, never been proposed before.

In A Plutocratic Proposal: an ethical way for rich patients to pay for a place on a clinical trial we show how the system could work and argue that all the usual and obvious objections to patient-funded clinical research do not apply in this case; indeed, in several respects the Plutocratic Proposal is more ethical than established methods of funding human experiments.  Furthermore, we believe the Plutocratic Proposal will provide new money for research, particularly for neglected research into rare diseases; it will not deplete the already limited resources of traditional funders.

The ‘usual ethical objections’ include such points as:

  • paying participants could be exploited by research teams desperate to run their trials;
  • research teams might bend their inclusion criteria to accommodate rich patients and so encourage bad science;
  • by enabling research groups to charge patients directly, they can bypass the peer review process and so promote quack ideas;
  • paying patients will attempt to buy their way off concurrent comparison wings, which is not only ethically but scientifically ruinous.

How can a patient-financed funding scheme overcome such fundamental and, until now, apparently insuperable ethical objections?  Read the paper to find out

Nudges in a Post-truth World.

22 May, 17 | by miriamwood

Guest Post: Neil Levy

Full Article: Nudges in  a Post-Truth World

Human beings are motivated reasoners. We find ways to believe what we want to believe, sometimes even in the face of strong evidence to the contrary. This fact helps to explain why so many political issues are intractable, and why so many of us reject the scientific consensus on urgent issues like GMOs, vaccination and climate change. Given the importance of these issues, any means of increasing our responsiveness to evidence deserves exploration.

Nudges – proposals, stemming from the behavioural sciences, for changing the way people act by changing their environments – may be one way of increasing responsiveness to evidence. In my paper, I briefly review evidence that suggests that people resist messages for (apparently) irrelevant reasons, and that by focusing on these reasons, we can make them more responsive to these messages. For instance, people tend to dismiss testimony that comes from those who do not share their political ideology, even when the issue is an empirical one (like climate change). There is evidence that ensuring that the ideology of the source matches the ideology of the audience makes the audience more receptive to the message.

But nudges are ethically controversial. There are a number of reasons why they are controversial, but the central reason is that many people see them as threatening the autonomy of the nudged. It is one thing to address people are reasoning beings, by giving them arguments. It is another to address them as mechanisms, bypassing their reasoning. The truth of claims about vaccines, say, do not depend on who says them, and if we make people more responsive to these claims by altering their source, we manipulate them. We give them causes for their beliefs, not reasons. Or so many people claim.

more…

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