Apologies for the brevity and late arrival of this week’s BioEdge. We plead pressure of Christmas and the holiday season… In any case, all of the bioethical oxygen this week was sucked up by the report from a US Senate committee on the “enhanced interrogation” techniques used by CIA operatives to convince al-Qaeda detainees to reveal their secrets. Although the broad outline of this drama was already known, the details are dismaying. It is shameful and unworthy of a great country, as Senator John McCain commented: “Our enemies act without conscience. We must not.”
On a different note, without prejudice to the truthfulness of the aforementioned excuses, I recently saw a stunning film by the brilliant Iranian director Asghar Farhadi, Le Passé (The Past). It begins as a conventional melodrama about an Iranian man who returns to Paris because his French wife wants a divorce. All the characters, both adults and children, are struggling to free themselves from a spider’s web of misunderstandings and secrets. The melodrama becomes an intensely engaging detective story.
The bioethical angle? At the heart of the conflicts is a brain-damaged woman, apparently in a permanent vegetative state. Is she still married? Does she have dignity? Is she still lovable? I can’t remember the last time I was so touched by the honesty, humanity and artistic skill of a film. Sorry, not true – the last time was Farhadi’s Oscar-winning film A Separation. But that lacked a bioethical angle.
I just stumbled across a documentary which was recently released in Peru, Cicatrices del engaño (Scars of Deception), about the 300,000 women and 22,000 men forcibly or deceitfully sterilised by population control officials in the government of President Alberto Fujimori in the 1990s.
I hope that it will be released in English (at the moment, even the Spanish subtitles in YouTube are awful), so that we can all learn lessons from this ghastly abuse of human rights. Earlier this year the former president, who is currently serving a 25-year jail sentence for crimes against humanity, was exonerated of blame for the sterilization program. The prosecutor said that he could find no evidence that women had been systematically coerced.
The tears of the women in the documentary suggest otherwise. While Mr Fujimori and bigwigs in his administration ought to put in the dock for this atrocity, how about the doctors who did the tubal ligations? Shouldn’t they be investigated for their zeal in meeting sterilization quotas set by the government? “The worst of it all is that one of the doctors who damaged me for life is still working in the Izcuchaca health centre,” one woman told the IPS news service. “Every time I see him I feel furious, because nothing has happened to him.”
A closer examination of this dark chapter might reveal other enablers. The US government and the United Nations Population Fund gave development aid to the population program, for instance. Ironically, just before the 1995 Beijing Women’s Conference the government removed a ban on sterilization as a method of birth control. This was widely applauded at the time by feminist groups as a bold step forward and a poke in the eye to Catholic Church, which opposed sterilization. As they say: be careful what you wish for.
The other day I was speaking with a friend in Tasmania who has been researching the fate of a great-uncle who disappeared in the Battle of Fromelles. This was one of the worst defeats of World War I for Australia. In a single day, July 19-20, 1916, the 5th Australian Division was cut to pieces.
German intelligence later called the attack "operationally and tactically senseless". The Australians were not well prepared for conditions on the Western Front, were poorly led, did not have the element of surprise, and were exposed to flanking machine gun fire from higher ground. There were 5,533 dead and wounded.
After 98 years, you might think that this classic “over the top” tragedy would have been forgotten. Not so. Australian authorities are still trying to track down each and every one of their fallen.
In 2009 a mass grave of 250 Australian and British soldiers was discovered. Researchers set to work to identify the remains. With DNA testing and Google this has become much easier for them. They scour records for descendants and relatives of fallen soldiers and then ask for DNA samples. These are matched against the remains. It is a painstaking and expensive project, but one worthy of a civilised society where no one’s life is ever without value.
What struck me as I read comments on the Army website and on newspaper articles was that identification had brought peace to relatives three or four generations later. “This is my great great uncle,” wrote one woman. “We never knew what happened to him until now. We just assumed it was a death in the war, but it's now good to have some closure, even if we never had a chance to know him.
There is something deep, visceral, lasting, and even imperative about genetic ties. We are hard-wired to hunger for our roots. That’s partly why I am sceptical about contemporary moves to create genetic orphans through surrogacy, or possibly artificial gametes. Every child has a right to a biological mother and a biological father, not just to provide care and comfort, but to give them a sense of personal identity.
The Nuffield Council on Bioethics, the UK’s peak body for advising the government about bioethical issues, recently hosted a panel discussion on “Bioethics in 2025: what will be the challenges?” There were four panelists, all women and all “exciting new voices”, according to BioNews. Inevitably, each speaker interpreted the scope of the topic differently, but some interesting themes emerged.
Here are a few of the issues to watch for, the speakers said:
A more inclusive discourse must emerge in bioethics. Children, ethnic minorities, cultural minorities, patients and carers all deserve to be heard.
More inclusive access to reproductive technologies is needed.
There must be more global equity in access to healthcare.
We will understand better that the limits of our moral community should not stop at humans.
We will be considering the merits of a “morality pill” which will encourage socially acceptable behaviour.
Advances in human enhancement mean that our bodies will be repaired or augmented by animal or mechanical parts.
I regret that I was not able to attend, as it sounded like a very stimulating evening. But I wonder if bioethical challenges of the coming decade will really centre on inclusion and enhancement. These have a certain cachet in Hollywood and Harvard, but in the real world? I’d vote for euthanasia, markets in reproduction and organs, conscientious objection and a revival of eugenics.
What would you nominate as the leading bioethical challenges of 2015?
As I may have said before, I do not support assisted suicide. But I would like to understand it better. In this respect, I have found nothing better than a Swiss documentary about the work of Dr Jerome Sobel and his group Exit in the Francophone cantons of Switzerland.
Exit: le droit de mourir (Exit, the right to die) was made in 2005 and won a few prizes. I reviewed it some time ago and it always stuck with me. Earlier this year the director finally eleased it on YouTube (with subtitles). It is a stunning film with very subtle editing and brilliant photography. It is also quite disturbing as several people die before the unblinking gaze of the camera.
I was expecting ethical arguments in favour of assisted suicide such as terminal illness or unbearable pain. But to my surprise, his angle was that the accompagnateurs, the death escorts, are warm-hearted guardian angels who have a vocation to lead people into a better place. Sobel is depicted as a Christ-like figure; a board meeting is even framed as a Last Supper, featuring him surrounded by his 11 disciples.
Have a look for yourself, but my feeling is that a person with a vocation to help people die is a dangerous man or woman. Take Philip Nitschke, the recently suspended Australian doctor who informs people about how to kill themselves. He believes that he is crusading for human rights; he has been linked to a number of deaths. Sobel frames his work as a post-Christian work of charity. Perhaps that is why his organisation is pressing for access to Swiss nursing homes (see story here). They want to proselytise as many as possible.
This is one of the most dangerous aspects of legalised assisted suicide and euthanasia. It will be aggressively promoted by groups who feel that they have been called to kill.
One of Australia’s most renowned bioethicists died in Melbourne this week, nearly 40 years after he was diagnosed with a terminal illness. Nick Tonti-Filippini was 58. He suffered from chronic rheumatoid auto-immune disease which led to serious complications with his kidneys and heart, in addition to many other problems.
Nonetheless, he was a staunch and perceptive opponent of euthanasia. In an open letter to an Australian politician, he wrote:
“I cannot speak for all people who suffer from illness and disability, but think I can speak more credibly about suffering, illness and disability than those people who advocate for euthanasia presenting an ideological view of suffering and disability. Facing illness and disability takes courage and we do not need those euthanasia advocates to tell us that we are so lacking dignity and have such a poor quality of life that our lives are not worth living.”
But Nick was a highly competent professional bioethicist rather than a political campaigner. He was a member of the Australian Health Ethics Committee of the National Health and Medical Research Council and chair of sub-committees on the Unresponsive State and Commercialization of Human Tissue. He was much sought after as a consultant bioethicist by government bodies, including UNESCO, the US Congress and the German government.
Nick taught bioethics at the John Paul II Institute for Marriage and Family in Melbourne and was a devout Catholic. But the supervisor of his Master’s degree at Monash University was the world-famous utilitarian ethicist Peter Singer. It is hard to imagine men with two more different world views, but he used to speak warmly of Singer. “Peter has a great sense of humour. He’s quite unlike his public image, where he’s always looking for an argument,” he told The Age. He regarded some of Singer’s ideas as evil, but advised people not to confuse the ideas with the man. “Peter’s principles don’t touch Peter’s emotions. They are two separate things.”
Nick was a model of sober intellectual rigour and generosity of spirit. From time to time I used to seek his advice for background information. He always responded quickly and in great depth. He is a great loss for Australia and for bioethics.
There can be no more persuasive explanation than an attractive, intelligent young woman with tears trickling down her cheeks. As she dabs at her eyes, the trembling words always sound heart-piercingly right. Perhaps from an evolutionary perspective, we’re programmed to agree with her, because young women are meant to transmit life.
It’s the tears that sweep us away in the videos which Brittany Maynard has made with assisted suicide activists at Compassion and Choices, not the ideas. With more than 9 million hits on YouTube, it must have been the best-ever advertisement for right-to-die lobby. The ideas are pretty shop-worn. Marcia Angell, a campaigner for assisted suicide and a former editor of the New England Journal of Medicine, puts them in a nutshell in a recent Washington Post op-ed: “people are increasingly asking why anyone — the state, the medical profession, religious leaders — would presume to tell someone else that they must continue to die by inches, against their will.”
Laws must be changed, in other words, to support Brittany's absolute autonomy. But if this is the case, isn’t it discriminatory to restrict this to the terminally ill? Why not lovelorn teenagers or impecunious grandmothers? It's a blindingly obvious objection which is not refuted in the video.
Ironically, tears were used by the Nazis to persuade Germans to support assisted suicide. Brittany’s beautiful wedding photos, her artfully scripted message, the lachrymose piano chords, her family's words of love and support -- they all remind me of a competent 1941 German melodrama called Ich Klage An (I Accuse). The beautiful young wife of a doctor begs for release before she becomes “deaf, blind, idiotic”; the family doctor refuses; her husband obliges. In a final speech to the jury her grieving husband accuses the law of being inhumane.
It seemed like a good argument then; it seems like a good argument now. A big problem though, in both cases, is what comes afterwards…
Thankfully Brittany has decided that life is still too good to say farewell. She wants to live and she has cancelled today’s rendezvous with death. She is a beautiful, intelligent woman. I hope that she sticks around for a lot longer.
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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.