A big thank you to all who took the time to respond to our recent readers’ survey. We received more than 700 responses – a record! Here are some of the more significant findings we’d like to share with you.
1. Almost 60% of our readers have a masters or a doctorate. More than 75% work as doctors, nurses, university lecturers, ethicists, schoolteachers or scientific researchers.
2. There is scope to tap your interest to be part of our mission in a more tangible way. More than 40% are prepared to pay a subscription fee or make a donation, but close to 80% have never donated.
3. Most of you say that BioEdge is informative, has interesting angles you can't find elsewhere and is objective in its news coverage. More than 90% like the high quality or timeliness and relevance of our articles. More than 60% like our website design and functionality. More than 30% often share BioEdge with colleagues and friends.
4. The top subject areas of interest are euthanasia, abortion, genetic engineering, reproductive technology, bioethics theory, stem cell research and conscientious objection.
5. Here are some of your suggestions for improvement:
There are some topics where discussions at greater depth, or referral to a more detailed source would be helpful.
Anytime you have short, compelling audio sound bites, make them available.
Articles could be more in depth, longer and with more technically demanding content.
6. Finally, here are some of your testimonials:
As I am not able to keep even moderately in touch with the world of medical technology, I appreciate having my attention drawn to recent developments and some expression of opinion on these which enable me to make up my own mind. Jean Cartmell, Wellington, New Zealand.
BioEdge is great for applying ethical issues that we discuss as students involved in the health field, and applying these to current world events. Corinne, Hobart, Australia.
For me BioEdge is the leading edge. It is often where I begin to begin an inquiry and take it deeper or expand it. I strongly recommend it to my students and colleagues. Jack Furlong, Transylvania University, Lexington, Kentucky, USA
BioEdge is very useful for students of bioethics ,it highlights the current bioethical dilemmas generated by advances in science and technology. Students appreciate the diversity of the issues that are exposed and the controversies arising from them as well as the laws promulgated by various countries. Adnan Mroueh, MD, Beirut, Lebanon.
BioEdge is the kind of publication a freedom-loving thinking person is delighted to read. Not because it is a comforting cheerful collage of news, but because it is a stark and alarming messenger about things hidden from most people by a complicit media while politicians and non-elected social tinkerers go about the business of perfecting society according to their own self-image. BioEdge is a wake-up call. Teague Cuddeback, Houston TX, USA
BioEdge is well informed, incisive, and admirably counter-cultural when necessary. A good antidote to the consequentialism of much contemporary bioethics. Robert Flynn, Gatineau, Québec, Canada
In the age of banal sensations and superficial approaches, BioEdge offers a regular, well-selected, informative, and objective overview of bioethical hot topics – a precious source for those involved in teaching. Amir Muzur, Rijeka, Croatia
BioEdge keeps me aware of bio-ethics issues which my local news media does not even care to mention or report. Without BioEdge's regular newsletter I would be in the dark on so many important issues. Sarjeet Singh Sidhu, Ipoh, Malaysia
Thanks to all who participated in the survey. The results were very heartening and we hope to improve our service in the year ahead. Cheers!
Helping patients with dementia will probably be one of the biggest human dignity issues of our century, as the proportion of elderly grows across the globe. It seems disgraceful to warehouse them in nursing homes, but often there are few alternatives.
So I was really delighted to see a ray of light in a new documentary, Alive Inside, which won the 2014 Sundance Film Festival Audience Award for an American documentary. It features the power of music to raise patients out of their torpor. Sometimes the effect of placing earphone and an iPod on an unresponsive patient slumped in a wheel is little short of miraculous.
One wonderful clip from the film features Henry, who spends his days in an almost catatonic state in a 600-bed nursing home. But once he began to hear the music from a favourite artist of his youth, Cab Calloway (famous for “Minnie the Moocher”), he begins to answer questions, his eyes light up and he even gives a short speech:
“It gives the feeling of love, romance! I figure right now the world needs to come into music, singing. You’ve go beautiful music here. Beautiful. Lovely. I feel band of love, of dreams. The Lord came to me, made me holy. I’m a holy man. So he gave me these sounds.
The film also critiques over-reliance on anti-psychotic medications for demented patients. “What we’re spending on drugs that mostly don’t work dwarfs what it would take to deliver personal music to every nursing home resident in America,” says Dr Bill Thomas, a gerontologist and advocate for long-term care reform. “I can sit down and write a prescription for a US $1,000 a month antidepressant, no problem. Personal music doesn’t count as a medical intervention. The real business, trust me, is in the pill bottle.”
Obviously iPods and Cab Calloway playlists alone will not turn dementia around; the issue is far more complex than this. But this uplifting documentary at least shows that some simple solutions work.
I was delighted to see the Nobel Peace Prize go to Malala Yousafzai, of Pakistan, for her work in advocating education for girls, and Kailash Satyarthi, of India, for protesting against child slavery and bonded labour.
Perhaps the prize panjandrums are getting closer to what may become one of the big human rights of the first half of our century: commercial surrogacy. This week the Australian media uncovered yet another surrogacy scandal after the Baby Gammy case. This time a couple abandoned a twin in India because it was the “wrong” sex. Apparently a senior politician leaned on Australian consular staff to expedite the adoption – and the abandonment.
In the murky world of commercial surrogacy the rights of the children and the mother are clearly at risk. Two senior Australian judges have now called for a national inquiry. "I've spent many sleepless nights. I've heard things and I've seen things that I really don't think anyone should see ... and I find it deeply distressing that nothing is being done about the issue," says the Chief Judge of the Federal Circuit Court, John Pascoe.
“Surrogacy undermines the human dignity of the woman carrier as her body and its reproductive function are used as a commodity … The unregulated nature of surrogacy poses additional concerns regarding the exploitation of women in disadvantaged positions and fertility tourism resulting in a black market of ‘baby selling’.
“The practice of surrogacy also disregards the rights and human dignity of the child by effectively turning the baby in question into a product. The Convention on the Rights of the Child declares that children have a right to be protected from abuse or exploitation and calls on States to act in the best interest of the child. Surrogacy arrangements turn the baby into a commodity to be bought and sold. Moreover, surrogacy manipulates the identity and parentage of children and robs them of any claim to their gestational carrier, which recent research points to being harmful to the development and wellbeing of the baby.”
I hope that the Nobel Peace Prize committee is listening.
Dr Philip Nitschke, Australia’s leading advocate for euthanasia and assisted suicide, was recently suspended (but not deregistered) after his involvement in the suicide of a man suspected of murdering two of his wives. This has not stopped Dr Nitschke from campaigning. In today’s issue of The Guardian, he makes a passionate case for allowing prisoners to choose euthanasia rather than linger in prison with a life sentence.
“Imprisonment for life, with no hope of parole, is torture. I thought then and now that a modern civilised Australia should not be involved in torture, no matter the crimes of the prisoner.”
Dr Nitschke has been very impressed by the progressive policies of Belgium, where a judge recently allowed a prisoner to choose euthanasia. “Under the Belgian model, physical or psychological suffering that is incurable or constant can be the grounds for voluntary euthanasia. What is there not to agree with?” he writes.
His facts, for starters.
The case of the Belgian rapist and murderer, Frank Van Den Bleeken, illustrates much of what is wrong with Nitschke’s argument. Strictly speaking, despite his horrific crime, Van Den Bleeken was not a prisoner but a patient. He was being held “at the Governor’s pleasure”, as Australian law quaintly puts it, because he was mentally ill and a danger to society. Belgium’s dysfunctional mental health system was unable to treat him, so Van Den Bleeken applied to be transferred to a Dutch prison with advanced treatment for sex offenders. When the Belgian government refused, Van Den Bleeken requested euthanasia.
In short, Van Den Bleeken’s suffering could have been cured, but it was either too expensive or too much bother for the Belgian government. As with most cases of euthanasia or assisted suicide, the real problem is that society has tossed its most vulnerable citizens onto a scrap heap. And, as Dr Nitschke has kindly demonstrated, the best way to defend this option is to twist the facts out of shape.
Sorry, folks, no folksy message this week. Instead, we have something far more fun: our annual online survey, which we have not actually run for the last two years. Since then our subscriber list has grown and bioethics is on the front page more than ever.
So, to improve our service and to increase our readership, we need to know how you use BioEdge and how we can serve you better.
Please take 3 or 4 minutes to fill it out. It is not at all painful. Here’s the URL:
Are bioethicists more ethical than the rest of us? I’m not aware of data about bioethicists as such. However, some research has been published about moral philosophers, of which bioethics is a sub-discipline. One study found that ethics texts were more likely to be missing from academic libraries than non-ethics books in philosophy.
A couple of other studies found that ethicists behaved no more courteously than non-ethicists and that they were just as likely to avoid paying registration fees as non-ethicists at conferences of the American Philosophical Association. And last year, the world was shattered by the scandalous news that moral philosophers were no more likely to respond to student emails than other kinds of philosophers.
It is a bit disappointing to learn that bioethicists probably land in the middle of the Bell curve in terms of everyday ethical behaviour. But do they still have special ethical obligations? An interesting article in the latest issue of the Cambridge Quarterly of Healthcare Ethics argues that they do. Bioethicists are supposed to be whistleblowers.
D. Robert MacDougall, of New York City College of Technology, argues that they have “a heightened obligation to whistleblow”. Not because bioethicists are obliged by virtue of their professional training to be saints – they aren’t. But because “the condition of that employment is the widely held supposition that bioethicists do not ultimately defer to an employer’s determination about acceptable risks, but rather that they exercise independent judgment on these matters”.
In other words, society expects that bioethicists will make up their minds without fear or favour.
Does this actually happen? Dr MacDougall references a 1996 article in the Journal of Clinical Ethics, “Where are the heroes of bioethics?” The author’s opening sentence was “Here is my problem: I don’t know of a single case of a bioethicist who has acted as a hero in that role.” Have things changed since then? Are there any nominations for bioethical heroes, people who have risked life, limb or employment to fulfil their responsibilities?
My Latin is not what it once was and it was never much. All I can remember is classic phrases like Caesar ad sum jam forti, Brutus et erat; Semper ubi, sub ubi; and Illegitimi non carborundum. So lately I have been making amends for schoolboy sloth by reading a few of the classics. I have just finished (and highly recommend) The Annals of Imperial Rome, by Tacitus, which chronicles the years of Tiberius*, Claudius, Caligula and Nero. Tacitus would have made a good op-ed writer on the New York Times, with his sardonic analysis of palace politics.
Whoa! Excuse me: just where is all this going? Will we get bioethics or just bloviation?
Well, sort of. Let me press on.
It was a bit dismaying to read how determined the Emperors were to pass on their power and prerogatives to their children -- but how little they did to produce them. Augustus had no sons and adopted Tiberius, his step-son by his third wife. Tiberius was succeeded by an adopted grand-nephew, Caligula, and the odious Caligula by his uncle, Claudius. Claudius’ only son died in his teens and so he was succeeded by the perverse and capricious Nero, the adopted son of his fourth wife. As the Romans would have said, contortum est, it’s complicated.
Is it drawing too long a bow if I see a parallel in the couplings of our own era?
Below we report on services provided by EggBanxx, a new company in Manhattan which freezes eggs for socially infertile single women. Reading between the lines, you can feel the pain of its over-achieving clients, who are mostly in their early or mid-30s and desperate to bring at least one child into the world before their biological clock stops ticking. Behind them may be two or three relationships; ahead is loneliness. The statistics say that most of them will fail.
Like the emperors of Rome, the yuppies of Manhattan have nearly all the autonomy they like. Autonomy is the cement of most contemporary bioethical frameworks. But just as it brought little joy to the emperors, it fails us as well. There must be something more to ethics.
2014 marks 2,000 years since the death of Augustus. You would think that two millennia of technological, educational and social progress would have raised the level of our romantic relationships as well as our standard of living. It seems not.
* Sorry, I wrote Domitian originally, instead of Tiberius.
BioEdge passed a milestone this week – our 10,000th subscriber. We are delighted that so many people receive the newsletter and pass it on to their friends. Word of mouth is the best advertising!
However, we feel that our potential readership is really many times this figure, so please encourage friends and colleagues to sign up. It’s free! If you are teaching bioethics at a university, why not suggest that your students subscribe? It will give them lots of stimulating ideas to ponder.
After more than 2,000 deaths, most of them civilians, I ought to write something about the war in Gaza. But it is excruciatingly difficult for no matter what you say, it will be denounced by one side or the other as biased and idiotic.
The Lancet recently published an incendiary letter attacking Israel which provoked furious replies from Israeli doctors. One allegation was that The Lancet had lowered its high editorial standards by publishing politically biased material.
I’m not sure whether this holds water. The Lancet – and most of the other leading journals, like Science, Nature, JAMA, the New England Journal of Medicine – often take sides on issues like abortion, euthanasia, healthcare and so on. They don’t ignore them and hope that they will disappear. Why not a war?
Well, for one thing, wars are even more ethically snarled than abortion. It may be beyond the wit of the editors. Painting one side as the villain is simply wrong; both sides have made bad choices.
Nonetheless I think that it is important for medical journals at least to point out that war is always a deeply ethical issue, not just a utilitarian calculus. If doctors are supposed to be custodians of humane values, their journals ought to be ethical gadflies.
That’s why I think that The Lancet is right to take a stand on this tragic war and the that the other journals have been remiss, perhaps even cowardly, in ignoring it. What do you think?
An obituary of Mark Twain once appeared before his demise. When asked about this by the press, his characteristically wry response was “the report of my death has been greatly exaggerated”.
I wonder what he would make of 200 exaggerated reports. Just as a bit of comic relief, let us focus on the latest hospital scandal in Australia. The Austin Hospital in Melbourne sent out 200 reports to general practitioners informing them that their patients had died. The real story was that they had been successfully discharged from the hospital.
Explanation? The hospital blamed clerical error and a wrong mouse click. According to its spokeswoman:
"Austin Health automatically notifies GPs when their patients are discharged from hospital. Notifications sent in the early hours of Wednesday, 30th July, incorrectly advised GPs that their patients, who had been discharged the previous day from the Austin Hospital, had died.”
The hospital has apologised unreservedly for the night of the living dead, but the issue is still alive in Parliament. The opposition leader used it to hammer the government: it is "symptomatic of a health system that is in crisis, a health system where emergency departments are full".
It’s lucky that the paperwork was sent to GPs rather than to families. I can imagine that some people might have turned up their toes immediately upon opening a letter like that. Why do we need expensively-produced TV comedy when all we need to do is look at the evening news?