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?
It’s amazing how mistaken I can be about how the public will react to bioethical issues. Take the recent sad case of Baby Gammy which has featured in newspapers around the world. He is a Down syndrome infant boy, one of twins carried by a surrogate mother in Bangkok for an Australian couple, David and Wendy Farnell. She refused to abort Gammy and the couple allegedly refused to take him. So now he lives in limbo with his surrogate mother.
The media was horrified, especially after it emerged that Mr Farnell, 56, had spent three years in jail for molesting two girls aged 7 and 10. Baby Gammy looked so cute and his Thai birth mother so loving. How could anyone be so heartless to propose aborting a twin? How could anyone be so heartless as to abandon their own baby? How could a paedophile be allowed to commission a surrogate mother?
To be honest, I didn’t think that the story was a big deal. I thought that everyone knew that 90% of Down syndrome babies in Australia and most Western countries are aborted. I thought that everyone knew that “foetal reduction” (ie, aborting excess children in a multiple pregnancy) is common. I thought that everyone knew that surrogacy in developing countries exploits young women. I thought that everyone knew that many, if not most, clients of these surrogates were creating unconventional families – either for gays or single women.
How wrong I was! Apparently the media used to believe – and probably still does – that surrogacy is just an odd way to give children to doting mums and dads. They were completely ignorant of the many reasons why surrogacy is bad public policy which should be banned.
Flash! Bangkok police raided an apartment this week and discovered nine babies between one month and two years, all born to surrogate mothers from the same Japanese businessman father. The births were not registered. He is a very loving dad, his lawyer told The Japan Times. Maybe. Maybe not. It sounds to me like a child sex trafficking scheme. It happened recently in Australia. Notch up manufacturing babies to be abused as another good reason to ban surrogacy.
Every once in a while, I enjoy revisiting misanthropic classics. I picked up Gulliver’s Travels the other day and thumbed through his adventures in Luggnagg. This destination is less famous than Lilliput, but has one memorable feature, the immortal struldbrugs. When he first hears about them, Gulliver rhapsodizes about the wisdom, wealth, power and “sublunary happiness” which they must enjoy.
However, the inhabitants of Luggnagg set him straight. The struldbrugs have immortality, but not perpetual youth. When Gulliver examines them, he realises his error: “They were the most mortifying sight I ever beheld; and the women more horrible than the men. Besides the usual deformities in extreme old age, they acquired an additional ghastliness, in proportion to their number of years, which is not to be described.”
What I had forgotten was the attitude of the citizens of Luggnagg. At the age of 80, the struldbrugs are forced to become non-persons, maintained at the expense of the state with a scanty pension.
“… they are looked on as dead in law; their heirs immediately succeed to their estates; only a small pittance is reserved for their support; and the poor ones are maintained at the public charge. After that period, they are held incapable of any employment of trust or profit; they cannot purchase lands, or take leases; neither are they allowed to be witnesses in any cause, either civil or criminal.”
Are there any lessons for the 21st Century in Jonathan Swift’s satire? Perhaps. Because of declining birth rates around the world, the proportion of octogenarians, nonagenarians and even centenarians is growing rapidly. Modern medicine may keep them from degenerating into struldbrugs, but they will inevitably become more dependent and lose their political and social influence.
The scariest thing would be if we were to become as misanthropic as Swift and to treat our elderly with contempt and bare tolerance, rather than respect their contributions and their inalienable dignity. The struldbrugs “are despised and hated by all sorts of people,” he writes. In a latter-day Luggnagg, euthanasia and assisted suicide begin to sound rather sensible. Perhaps we need a Struldbrug Pride movement to protect our elders from abuse.
Tales of atrocities emerging from the regions captured by the Islamic State, or ISIS, or the Caliphate, are already legion. There have been beheadings, crucifixions, mass executions, expulsion of Shia and Christian families unless they convert, burned churches.
You could believe almost anything about these guys. But something sounded a bit fishy about claims of female genital mutilation in Thursday’s Guardian. A UN official told reporters: "We have current reports of imposition of a directive that all female girl children and women up to the age of 49 must be circumcised.”
Even more sinister was a report in BasNews, a Kurdish website: “The Spokesman of Mosul Police Ahmed Obaydi told BasNews: ‘Baghdadi’s decision to have all women circumcised is, as he claims, to prevent immorality and promote Islamic attitudes among Muslims. The decision was made by Baghdadi as a ‘gift’ for people in Mosul.’”
Something tells me that this will be proven false. The Islamic State has denied it (via Twitter) and the Guardian was unable to verify the claims. Bad as the Caliphate is, this is probably an urban myth created by the embattled Syrian government to scare off donors to the caliphate.
This is remarkably like the ghoulish stories of harvesting organs from prisoners of war which have accompanied conflicts in Kosovo, Iraq, Syria and Palestine. For instance, an article on an opposition website called The Syrian Observer has reported trafficking by government officials:
“… a thief crashed into a house in a luxurious Damascus suburb [in 2008] and discovered a warehouse full of frozen organs, ready to be sent around the world. The thief turned himself over to the authorities and reported the place. After monitoring the house for hours, police managed to arrest the criminals, thus explaining a series of mysterious attacks going back years. As the story unfolded, the names of high-ranking members of the Syrian regime began to pop up and the story suddenly disappeared from the local news.”
There could be some truth in a story like this, as organ trafficking does happen in these countries. But it is just as likely to be a fabrication aimed at smearing the Assad regime.
Perhaps there is a paper for an ambitious young academic in these dark tales – bioethics in information warfare. We all feel a deep horror when confronted with the violation of bodily integrity – rape, first of all, but also FGM or being a quarry for organs. It is a fear that can be exploited for political ends.
If I am to be completely candid, editing BioEdge can, at times, be a bit depressing. It has its bright spots, but often enough we traffic in knavery, obfuscation, mendacity, cruelty, greed and even homicide. It comes with the territory, I suppose, so I mustn’t complain.
However, there are bright spots, like indulging myself in Yes, Minister clips on YouTube when we need to illustrate articles about government policy. Since so many stories in BioEdge are related to committee reports, politicians’ bluster and legislative debates, I find the cynical humour of this classic BBC series quite refreshing. Here are a few of my favourite quotes.
Activist: “There is nothing special about man, Mr Hacker [the minister]. We’re not above nature. We’re all part of it. Men are animals too, you know.” Hacker: “I know that, I’ve just come from the House of Commons.” ~ Political Animals
"Solved problems aren't news. Tell the press a story in two halves - the problem first and the solution later. Then they get a disaster story one day and triumph story the next." ~ Party Games
"The surprising things about academics is not that they have their price, but how low that price is." ~ Doing The Honours
"Reorganizing the Civil Service is like drawing a knife through a bowl of marbles." ~ The Whiskey Priest
"Press statements are not delivered under oath." ~ A Real Partnership
"The bench of bishops should have a proper balance between those who believe in God and those who don't." ~ The Bishop's Gambit
Sir Humphrey [the departmental head]: If you want to be really sure that the Minister doesn't accept it, you must say the decision is "courageous". Bernard [the minister’s private secretary]: And that's worse than "controversial"? Sir Humphrey: Oh, yes! "Controversial" only means "this will lose you votes". "Courageous" means "this will lose you the election"! ~ The Right to Know
Sir Humphrey: Bernard, Ministers should never know more than they need to know. Then they can't tell anyone. Like secret agents; they could be captured and tortured. Bernard: [shocked] You mean by terrorists? Sir Humphrey: By the BBC, Bernard. ~ Jobs for the Boys
Hacker: Are you saying that winking at corruption is government policy? Sir Humphrey: No, no, Minister! It could never be government policy. That is unthinkable! Only government practice. ~ The Moral Dimension
Bernard: That's one of those irregular verbs, isn't it? I give confidential security briefings. You leak. He has been charged under section 2a of the Official Secrets Act. ~ Man Overboard
In 2004 voters in California passed Proposition 71, a ballot measure which set up the California Institute for Regenerative Medicine (CIRM) and allotted US$3 billion in funding over ten years.
With California almost broke at the time, its prisons overflowing, its schools underfunded, its universities on a starvation diet, this was not an initiative which made a lot of sense – except that the Bush Administration was refusing to fund embryonic stem cell research.
Californians were told that life-saving science was being held hostage to political conservatism and religious dogma. Embryonic stem cells and therapeutic cloning would cure diseases ranging from cancer to HIV/AIDS to mental health disorders. If the Feds wouldn't support it, California had to step forward. So 59 percent of voters supported the establishment of the CIRM. Why wouldn’t they? The official voter information guide said that “Proposition 71 is about curing diseases and saving lives”. Who could argue with that?
Ten years later, the CIRM is gearing up to ask voters for another $5 billion in 2016.
Unfortunately for the CIRM, the most impressive advances in stem cell science during that time happened elsewhere. It was a Japanese researcher who won the Nobel Prize for stem cell science.
And more importantly, there have been no cures. “Almost every country would be jealous of what they've got in California,” Christine Mummery, a scientist from the Netherlands, told Nature recently. The CIRM has great scientists, the best facilities, the most funding, hundreds of scientific articles. But says Dr Mummery, “they haven't cured a patient, which is the critique”.
The total cost to the Californian taxpayer will be $3 billion for research approved in 2004 plus $3 billion interest plus $5 billion in 2016 plus $5 billion interest. That's $16 billion. It seems like an expensive consolation prize for the CIRM's scientists for not having won a Nobel. My advice to Californians is: don't do it.
Most of our readers probably live in countries where bioethics often revolves around the proper use of sophisticated medical technologies. My attention was drawn this week to a case in Sudan, where engagement with the technology is fairly simple: shackles and a noose.
At the centre of this case is Meriam Ibrahim, the Sudanese wife of an American citizen. In May, while she was heavily pregnant with her second child, she was found guilty of apostasy from Islam and sentenced to 100 lashes and death as soon as she weaned the baby. She refused to renounce her faith.
The Islamic government in Sudan interprets apostasy with a great deal of latitude. Ms Ibrahim was born to a Coptic Orthodox mother and a Muslim father who deserted the family when she was six. She was raised as a Christian but in the eyes of the Islamic state, she remains a Muslim. Marrying a Christian constitutes apostasy in Sharia law.
The cruelty of her confinement suggests that Sharia law also presents bioethical issues. Ms Ibrahim gave birth in jail but remained shackled throughout her labour. "I gave birth chained," she said. "Not cuffs – but chains on my legs. I couldn't open my legs so the women had to lift me off the table. I wasn't lying on the table." Now she believes that her baby is disabled because of the difficult birth. "I don't know in the future whether she'll need support to walk or not."
After an enormous amount of pressure, Ms Ibrahim was released from prison in June. But after she bought a ticket to the US, she ended up in jail once again. She is still awaiting permission to leave. A UNESCO chair for biosciences ethics was established at the University of Khartoum in 2012. I wonder if the University would be interested in looking into Ms Ibrahim’s case.
Archduke Ferdinand of Austria was assassinated 100 years ago today in Sarajevo. Within weeks the world was at war. In another four years some ten million soldiers and seven million civilians would be dead. Wars are a great time for innovation in many areas, but not in bioethics. My impression is that the basic principle of bioethics in “the Great War” was “whatever it takes to win”.
Poison gas, for instance, was banned by international conventions in 1899 and 1907. Yet it was used by all the belligerents. An English general put it nicely:
“It is a cowardly form of warfare which does not commend itself to me or other English soldiers. We cannot win this war unless we kill or incapacitate more of our enemies than they do of us, and if this can only be done by our copying the enemy in his choice of weapons, we must not refuse to do so.”
But perhaps we can learn something from World War I. Twenty-first Century bioethics has two main themes. One is autonomy and there’s precious little of that in the Great War. It was a time of massification and state dominance.
But the other is how to use technology without losing our humanity. In this respect, World War I is a cautionary tale. Before 1914 technology was esteemed as the path to peace and prosperity. It quickly became apparent that technology could become a death-dealing juggernaut which devoured men and spat them out. Science and scientists became tools for destruction.
I think that we need to be reminded of that today. The pre-War chemistry laboratories which produced so many useful products also produced phosgene and mustard gas. Our knowledge of cellular biology and genetics can be life-saving but also deeply inhumane. It’s good to learn from the past.
There have been a few moments in my life when I wished that I could speak Czech, which may be the most difficult of the Slavic languages. Today was one of them, as I tried to investigate a storm in a teacup in a Czech bioethics journal.
A senior university lecturer and Czech government adviser, 78-year-old Miroslav Mitloehner, has been sacked from his positions over the views he expressed in Časopis zdravotnického práva a bioetiky (Journal of Medical Law and Bioethics).
Mr Mitloehner’s argument was a familiar one: that children born with a severe disability should be left to die. He explains in the abstract: “It should be possible to abandon the effort to save lives (even when there is a chance of survival) when the malformations of the neonates are so severe that they exclude the future possibility for meaningful and conscious human existence.”
This is not just a common argument; it is effectively legal in the Netherlands and it is a common practice in many other countries.
Unfortunately tact must not be among Mr Mitloehner’s finer qualities for he used a word to describe these children which has been translated as “freaks”. Disability activists exploded and Mr Mitloehner became an unemployed bioethicist. (Here is where fluency in Czech would come in handy: I believe the offending word was “podivín”.)
By some stroke of good fortune, the editors of Časopis zdravotnického práva a bioetiky were able to dissociate themselves from Mr Mitloehner without repudiating his widely accepted ideas. They discovered that he had published the same article in another journal in 1986, so they have banned him from the journal. They did not apologize for the crude views.
I have learned an important lesson from this imbroglio: language matters in discussing infanticide. If babies are called “freaks”, you will lose your job. If you speak respectfully about killing them, you will (like Peter Singer) get awards from your government.
Perhaps the most thrilling moment of the 2014 World Cup in Brazil has already passed. Although most television stations missed it, a paraplegic man delivered the opening kick using an exoskeleton. It was an amazing feat of technology which promises terrific benefits for disabled people. I wish all the teams well, but the jubilant look on the face of 29-year-old Juliano Pinto may have signalled the most important kick of the entire tournament.