26 Aug, 16 | by Iain Brassington
Jumping to the defence of pharmaceutical companies over their pricing policies isn’t fashionable – and a lot of the time, it’s not going to end prettily. But it’s perfectly coherent to think that the profit motive is one of the motors of innovation, and that it’s part of the quid pro quo for spending money on drugs that may do nothing; in fine, that the profit motive may actually be a necessary part of getting the good stuff we want. To an economist, the phrase “normal profit” means the minimum profit necessary to keep a firm going – where average revenue equals average total cost. But if that was all that was on offer, there’d be no incentive to enter a market in the first place: if you’re (on average) in the same place as you were before entering the market, why bother? So it’s reasonable to think that there ought to be some level of supernormal profits. They help ensure we get a world that’s better tomorrow than it was yesterday.
On this account, the problem is not with making a supernormal profit – oh, all right then: what in everyday English we’d simply call a profit – but with gouging and/ or profiteering. The question that needs to be addressed is one of what level of profit, and what kind of return on investment, is reasonable. In some sectors of the economy, it may be quite high. For example, if I can manufacture a luxury good for which people are willing to pay through the nose, and make a stonking great profit from it… well, all hail me. In other sectors, this will not be the case.
The determinants of the level of acceptability will depend on all kinds of factor. It’s a complicated question, and it may defy satisfactory answers from time to time. All the same: one doesn’t have to be able to say that or why x is good in order to be able to say that y stinks. The story about EpiPen pricing that’s emerged over the last week or so is one such case.
Here’s the story: EpiPens deliver a dose of adrenaline, and are therefore very useful in cases of allergic reaction. Adrenaline is not expensive, but delivering it via a syringe is cumbersome; EpiPens make it much simpler. Mylan Pharmaceuticals obtained the rights to the device in 2007; since then, the price has risen by somewhere between 400 and 500% in the US (different sources offer different amounts; but a pack of two EpiPens costs about $415 in the US, and about $85 in France). That’s bad enough on the face of it, though Mylan CEO Heather Bresch does apparently have a defence, as Fortune explains: more…
25 Aug, 16 | by miriamwood
Guest Post: Bob Simpson, Monash University
Climate change, cooperation and moral bioenhancement
The Intergovernmental Panel on Climate Change has repeatedly said that greenhouse gas emissions increase the likelihood of severe and irreversible harm for people and ecosystems. And in his State of the Union address in 2015, Barack Obama emphasised these problems, saying that climate change poses the greatest threat to humanity’s future. We’ve come to expect pronouncements like these. Political leaders and transnational policy institutions both have an important role to play in implementing the measures needed to address threats from climate change – measures like international economic agreements, energy sector reform, and technological research.
By contrast, we wouldn’t expect advocates of biotechnological human enhancement to be proposing solutions to climate change. What does human enhancement have to do with oceanic warming or greenhouse gas emissions? According to people like Ingmar Persson and Julian Savulescu, who advocate “moral bio-enhancement”, these things are in fact related. They say that we should be finding ways to use biotechnological interventions to make people more trusting and altruistic towards strangers, and hence more willing to make personal sacrifices – like, say, dramatically reducing their carbon footprint – in order to cooperate in global policies aimed at mitigating the impact of climate change.
23 Aug, 16 | by miriamwood
Guest Post: Charles Dupras & Vardit Ravitsky
The ambiguous nature of epigenetic responsibility
Epigenetics is a recent yet promising field of scientific research. It explores the influence of the biochemical environment (food, toxic pollutants) and the social environment (stress, child abuse, socio-economic status) on the expression of genes, i.e. on whether and how they will switch ‘on’ or ‘off’. Epigenetic modifications can have a significant impact on health and disease later in life. Most surprisingly, it was suggested that some epigenetic variants (or ‘epi-mutations’) acquired during one’s life could be transmitted to offspring, thus having long-term effects on the health of future generations.
Epigenetics is increasingly capturing the attention of social scientists and ethicists, because it brings attention to the importance of environmental exposure for the developing foetus and child as a risk factor for common diseases such as cardiovascular, diabetes, obesity, allergies and cancers. Scholars such as Hannah Landecker, Mark Rothstein and Maurizio Meloni have argued that epigenetics may be used to promote various arguments in ongoing debates on environmental and social justice, as well as intergenerational equity. Some even suggested that epigenetics could lead to novel ways of thinking about moral responsibilities for health.
Is it fair that disadvantaged populations are exposed to an inequitable share of harmful environments – such as polluted areas – that are epigenetically-detrimental to their health? Who should be held responsible for protecting children and future generations from epigenetic harm induced by their environments? Should we hold the parents accountable for detrimental epigenetic impact of their behavior on their children? And how should we manage the possible risks of stigmatization and discrimination of people that we consider blameworthy of inflicting epigenetic harm on others? These sensitive questions call for a nuanced investigation of the impact epigenetics can have on our understanding of moral responsibility.
17 Aug, 16 | by miriamwood
Guest Post: Ben White and Lindy Willmott, Australian Centre for Health Law Research
This was the question we considered in a recent JME article about the role of law in decisions to withhold or withdraw life-sustaining treatment from adults who lack capacity. The short answer is ‘yes’. The longer answer is also ‘yes’ – although our results suggest that doctors may be acting in a way that complies with the law but not doing so because of the law.
Our article, which is part of a wider project, reports on survey results from 649 doctors from New South Wales and Victoria (Australia’s two most populous States). The doctors surveyed were from the seven specialties most likely to be making end-of-life decisions: emergency, geriatric, palliative, renal and respiratory medicine, medical oncology, and intensive care. We asked these doctors questions to determine their legal knowledge and we also asked them to respond to a scenario where following the law (by respecting an advance directive) conflicted with a more clinically oriented approach.
Compliance with the law was low with only 32% of doctors following the advance directive. Of interest was that doctors who knew the relevant law were more likely to comply with it and follow the advance directive than those doctors who did not know the law. Initially we thought that this could indicate that legal knowledge might lead to legal compliance. However, we then examined the reasons doctors gave for decision-making and also the factors they relied on to understand whether law was seen as important or not by doctors in their deliberations.
9 Aug, 16 | by miriamwood
Guest Post: Derick Wade
Back to the Beside: Making Clinical Decisions in Patients with Prolongued Unconsciousness
In 1994, not long after the Bland judgement, I was telephoned one day by the office of the Official Solicitor. “Was I familiar with the vegetative state, and if so would I be prepared to see two people for them?” I could reasonably honestly answer that I was familiar with it – one sees people left unconscious long after brain injury in my line of work. I did not claim expertise, and nor was I asked. I said “yes, to both questions.” and was sent relevant guidelines, and instructions. With practice I improved, and I wrote my first article on the matter with one of the Official Solicitors, published in the BMJ. I also saw one case who was definitely not vegetative (and two very well know experts had said that she was); the case has been written up with a ten year follow-up (not by me).
In about 2000, having seen about fifteen or more cases for the Official Solicitor and various NHS hospitals, the next chance event occurred. Talking one evening with my family about my work, my elder daughter asked me what I thought about the ethics of withdrawing food and fluid. I replied something like “Well, I have never really thought about it.” which horrified her, and surprised me (though research suggests that actually I am quite normal in that regard, as doctors usually consider matters clinically, not ethically). Anyway, I decided to research the issue and wrote another article, which was also published in the BMJ. Interestingly despite making several provocative statements, I only received one letter about it.
5 Aug, 16 | by Iain Brassington
Here’s a little amusement for the weekend, from a friend who lives in the States:
I received a state of the arts cardio monitor, per a prescription from a cardiologist, to determine if I have an irregular heart beat. All chrome and aluminium and clean and small with various electronic devices to transmit “information” to the company. 40 pages of instructions for the phone-like device. At one point the book (and the device) instruct me (i.e., tell me, not ask me) to push YES regarding company’s use of my information for research. I push NO.
Device will not allow diagnostic testing.
Doctor upset I won’t allow use of info.
I didn’t care UNTIL they told me I can’t use this device UNLESS I consent to use of the information for research. Now they are scrambling to ‘override’ the yes-only option, if possible.
I have to admit that, from a professional point of view, that’s kind of brilliant. And I suppose that it is consent, in a Hobson’s choice kind of a way.
1 Aug, 16 | by Iain Brassington
Those of us on the academic side of things will almost certainly recognise the situation: you’re sitting in your school’s Teaching & Learning committee, or a staff/student committee meeting, or something like that, and you hear the complaint from students that they should get more contact time. Academics should spend more time teaching rather than simply doing their own research. After all, they’re paying however-many thousand pounds for their education.
And you’ll’ve heard the standard rebuttals – and maybe even trotted them out yourself: that course fees cover not just teaching costs, but libraries, labs, buildings and so on; that university learning isn’t about hours in a classroom; that teaching and research are intertwined; that students benefit from being taught by the people who’re writing the papers they’re reading. But I wonder if these standard responses miss something important.
Back in April, I was getting companionably smashed with some of my final-year students, and we were talking about what they were going to do when they’d graduated, and about possible careers. One or two were interested in academia, and so a part of the conversation concerned what life’s like from my side of the fence. Predictably, pay was one thing that interested them. I mentioned that I’d made about £80 in total from the books I’ve written, spread over 10 years.
“And what do you get paid for a paper?”
I held back my bitter laughter, and explained how much you get paid for papers, and how much you get for peer-reviewing, and all the rest of it. The students had had no idea that this stuff was expected of us, but not remunerated. Why would they? Indeed, isn’t it insane that we’re not paid?
I think that one gets an insight here into students’ complaints about academics’ priorities being wrong. If they think that we get paid for publishing papers, then of course they’re going to think that we have an incentive to resist extra contact hours – and everything we tell them about extra contact hours being at best academically unnecessary, and likely as not counterproductive, will sound like so much bad faith. After all, of course we’d tell them that a course only needs 30 hours of lectures rather than 60 if we could be earning extra money with those spare 30 hours.
What prompts all this is an article in the Chronicle of Higher Education. It’s from 2012, but it’s started popping up in my social media timelines this morning, and Carl posted it on Fear and Loathing in Bioethics last night. It makes a proposal: more…
29 Jul, 16 | by Iain Brassington
Guest Post by Lindy Willmott and Ben White
For decades, researchers from around the world have found evidence that doctors provide futile treatment to adult patients who are dying. Some discussion of this topic has turned on matters of definition (see our recent contribution to this debate), with a broader concept of “perceived inappropriate treatment” being favoured by commentators more recently. However, this debate skirts the fundamental issue: how can treatment that may prolong or increase patient suffering, waste scarce health care resources, and cause distress to health care workers still occur in hospitals around the world? In other words, in these days of overworked doctors and underfunded healthcare systems, how is this still an issue?
Some research has tackled this although it has tended to focus on doctors operating in intensive care units and there has been very little research which looks at the reasons given by doctors from a range of specialties about why futile treatment is provided at the end of life.
Our study, undertaken by a team of interdisciplinary researchers, explored the perceptions on this topic of doctors, from a range of specialities, who are commonly involved with treatment at the end of life. We interviewed 96 doctors at three hospitals in Queensland, Australia, from a range of specialities including intensive care, oncology, internal medicine, cardiology, geriatrics, surgery, and emergency. Doctors reported that doctor-related and patient-related factors were the main drivers of futile treatment, although reasons relating to the institutional nature of hospitals were also important.
We found that doctor-related reasons were important in the provision of futile end-of-life care. Many doctors reported attitudes of their colleagues that reflect a cultural aversion to death. Doctors saw themselves as trained healers who viewed every death as a failure, and pursued a cure rather than appropriate palliative treatment for dying patients. Doctors described wanting to help the patient and not give up hope that a treatment might provide some benefit. They also said they wanted to satisfy patients, families, and medical professionals themselves that everything possible had been done, due to both emotional attachment to the patient and fear of the legal consequences of refusing demands for treatment. They also admitted to providing families and patients with a smorgasbord of treatment options as a means of avoiding uncomfortable conversations about dying. Doctors’ personalities, religious backgrounds, and their own experiences with death and dying were also said to contribute to the giving of futile treatment. more…
Guest Post by Warwick Heale
When NICE decides whether to make a treatment available on the NHS it considers both clinical effectiveness and cost effectiveness. Cost effectiveness is based on population-level QALY data, as is appropriate for a population-level policy. However, this can cause problems for exceptional individual patients.
When a doctor wants to offer an individual patient a treatment that has been deemed by NICE not to be cost-effective, the doctor can make an Individual Funding Request (IFR) to NHS England or a Clinical Commissioning Group. The doctor must convince the IFR Panel that the patient is exceptional and that it is worth spending the money on this patient, leaving less to be spent on others. The Panel’s presumption, based on the population-level data, is that the treatment will not be cost effective, and this stacks the cards against the individual patient, however extreme the patient or their condition may be compared to the population average.
One solution to this might be to consider individualised cost or response (individualised QALYs) or personalised valuations of health states (personalised QALYs). Applying these concepts might protect the patient from a treatment being refused even if he or she is markedly different from the population average. In doing this, we would actually promote utility and effective use of resources which is one aim of the IFR process, but one which I think it fails to achieve as effectively as it might.
Consideration of personalised QALYs also offers a justification for offering a Jehovah’s Witness a more costly alternative to blood transfusion, on the basis that this would actually maximise the utility we gain from our limited resources – in contradiction to the more obvious view that this would compromise utility. Furthermore, in doing this we don’t need to give any special status to religious considerations – the Jehovah’s Witness, the patient of a different faith and the atheist should all be subject to the same principles of personalised QALYs. Personalised QALYs also allow us to think about patient choice alongside utility rather than as independent principles.
Read the full paper here.
15 Jul, 16 | by Iain Brassington
James Wilson has drawn my attention to this opportunity, which may be of interest to those working in public health ethics.
This post is a Teaching Fellowship which, in the first instance, will start on 15 September 2016 and run until 14 September 2017.
The successful candidate will be expected primarily to provide teaching in Philosophy, Politics and Economics of Health at postgraduate and advanced undergraduate level and Global Justice and Heath at postgraduate and advanced undergraduate level. This will involve teaching two courses per year, one in the Autumn term and one in the Spring term. Some postgraduate supervision may also be required.
Each course requires two hours of teaching per week throughout the ten-week terms, plus course administration. Courses for postgraduates and third year undergraduates involve a two hour seminar per week. Although the overall content of the courses is fixed, the precise content will be up to the successful candidate.
As well as giving these lectures and seminars the Teaching Fellow will be expected to set and mark essay topics or examinations for their own courses, to supervise graduate teaching assistants, and to play a part in the normal duties of teaching and administration within the Department.