FROM THE EDITOR
The death of Nelson Mandela this week at the age of 95 is a reminder for me, at least, of how powerful human dignity can be in history. The notion of "human dignity" (usually in scare quotes) has been dismissed by a number of bioethicists as " flawed, fuzzy and unhelpful" or as just plain "stupid". Of course dignity is a bit fuzzy; most concepts that do a lot of heavy lifting are. But it is no more fuzzy than the alternative ethical criterion on offer, autonomy.
Mandela was the embodiment of dignity, in all its senses. He was a man who commanded respect and admiration, even veneration, because of the way he comported himself and dealt with others. But he also believed that every human being was worthy of respect because they possessed an inalienable dignity. As he wrote in The Long Walk to Freedom, "Any man that tries to rob me of my dignity will lose". Mandela was a pragmatic politician, but these were more than fine words. His strategy of nation-building through truth and reconciliation demonstrated his consistency. As a slogan, dignity was more powerful than even prosperity or nationalism.
Does this have any relevance for bioethics? Indirectly, yes. Apartheid, the system which Mandela fought and dismantled, led to terrible inequities in health care and created conditions which helped to make South Africa the AIDS capital of the world. All because respect for human dignity had been lost – or rather because the ruling National Party had redefined who is human.
The dreadful, deadening, dreary ideology of apartheid was (almost literally) gospel truth for South Africa's politicians. It was undemocratic, violent, and unjust to the blacks and coloureds, but it was supported by the whites. It was even defended as doctrine of Christianity by the Dutch Reformed Church, in defiance of all other denominations. Apartheid's defenders included intelligent, well-educated, even well-meaning people. But these qualities did not keep them from colluding in what is now regarded as a paradigmatic case of an unjust government.
Human dignity is powerful in the hands of heroes like Mandela, but fragile, oh so fragile, in the hands of ethical pygmies.Click Here to Comment on this letter
|This week in BioEdge|
The number of cases of Alzheimer’s disease is set to treble by 2050, according to the peak dementia research group, Alzheimer’s Disease International (ADI). ADI, which will brief G8 nations at a special conference in London on Wednesday, estimates that there will be 135 million people living with dementia in 2050, up from the current number of 76 million. It is calling on governments to develop comprehensive policies to prepare for the dramatic increase:
“The absence of dementia public policy renders governments woefully unprepared for the dementia epidemic and there is an urgent need for a collaborative, global action plan for governments, industry and non-profit organisations like Alzheimer associations.”
There are also concerns about ability of poorer countries to deal with the epidemic. According to the briefing, over two-thirds (71%) of people with dementia will be living in low- and middle-income countries. The researchers stress that while funding for dementia research is crucial, there is an equally important need for good quality care and support for caregivers. Priority must also be given to policymaking, development of health and social care services, and health systems.
Next year marks the 50th anniversary of the Declaration of Helsinki, the benchmark for ethical medical research on subjects. To mark the occasion, the World Medical Association, which is responsible for updating the document, has issued a seventh revision. The WMA president, Margaret Mungherera, President of the WMA, explains the scope of the changes:
"We have spent two years consulting our national medical association members, outside experts and the public and we are satisfied that today we have a Declaration that requires greater transparency about medical research, greater accountability and increased patient safety. The changes also place more obligations on the sponsors of research, on the researchers themselves and on host governments to protect research subjects."
The origins of the Helsinki Declaration lie in the atrocities by Nazi doctors during World War II. In the wake of the war crimes trials, the 1947 Nuremberg Code set down ten conditions for research to be ethical. This was the first standard of human research ethics. However, this needed to be refined to cover the ever-expanding need to test medical advances on human subjects.
The result was the 1964 Declaration of Helsinki. The first edition contained 11 articles and 713 words. With constant revision, it has grown to 37 articles and 2,240 words which are read and glossed like a Biblical text.
"there are nine distinct problems with the current version of the Declaration of Helsinki: it has an incoherent structure; it confuses medical care and research; it addresses the wrong audience; it makes extraneous ethical provisions; it includes contradictions; it contains unnecessary repetitions; it uses multiple and poor phrasings; it includes excessive details; and it makes unjustified, unethical recommendations."
In addition, he says, constant revision "undermine the legitimacy of the Declaration". A statement of ethical principles should be unchanging; otherwise it makes researchers think that they are not truly authoritative.
Saudi couples who are unable to have children are employing surrogate mothers in Asia and Europe even though surrogacy has been condemned by the country's Islamic Jurisprudence Council. An article in the Arab News did not estimate how many couples have done this. However, a number of doctors favour a more liberal interpretation of the law.
Dr Samir Abbas, a member of the Saudi Society of Gynaecology and Obstetrics, says “Such a phenomenon should not be treated as taboo, since the mechanism of food being fed to the fetus through the umbilical cord is akin to the act of a woman breastfeeding another person’s child, which is permissible in Islam.” Some commentators on the story also suggested that the husband take a second wife if the first is unable to bear a child.
In China surrogacy is also illegal, so some couples are going to US surrogacy agencies. The take-away cost of a child for them is between US$120,000 and $140,000. But if the child is born on American soil, it is constitutionally guaranteed US citizenship. This may come in handy for the commissioning parents as a way of getting a US education for the child or as a path to US residency for them. Surrogacy also allows parents to choose the gender of their baby and gives them a chance at having a second child in country which still enforces the one-child policy.
The search for UK volunteers willing to ditch privacy and donate their genome and health data to science has begun with the launch of the Personal Genome Project UK. The organisers hope to find 100,000 donors.
PGP-UK aims to offer every participant analysis of their genome, as part of a novel open consent protocol, enabling genomic data to be linked to medical and health records to create an information-rich resource that is made available under open access, allowing free and unrestricted access.
"Donating your genome and health data to science is a great way to enable advances in the understanding of human genetics, biology, and health," said Professor Stephan Beck, the director of the project.
Surrendering the right to genetic privacy is a novel development, especially at a time when countries all around the world are worried about keeping their data private from Google and security agencies. Entry to the project requires a thorough understanding of the risk of someone linking an on-line genome with a real person. "This is not for everyone," Jane Kaye, director of the Centre for Law, Health and Emerging Technologies at Oxford University, told The Guardian. "We are talking about information altruists here."
The US was the first country to roll out an open-source genome project. The genetic records of about 700 people have been published so far, but thousands have applied.
The program has its critics. "To put 100,000 genomes on the web so anyone can download them and use them is more than creepy," says Ross Anderson, a computer security expert at Cambridge University. "I wouldn't dream of doing it. You don't know where that's going to get to, we don't know enough about this yet.
Helen Wallace, of GeneWatch UK, also expressed reservations. "GeneWatch UK's view is that people should think twice before agreeing to share their genome openly. Remember your DNA contains a unique genetic code which can be used to track you and identify your relatives. Stored online it will be accessible to police, security and border agencies based in any country," she said.
"This project is sponsored by companies who are lobbying to expand the market for whole genome sequencing and open this data up to commercial exploitation. Genes are poor predictors of most diseases in most people but companies from Google to the private healthcare industry want to data-mine this information for personalised marketing, massively expanding the market for drugs sold to healthy people."
Shocking details surfaced this week of an Italian woman who had her baby forcibly delivered whilst visiting the UK last year. Alessandra Pacchieri, a Ryan air employee in Britain to complete a short airhostess training course, was taken to a psychiatric hospital in Essex by authorities after suffering an emotional breakdown. There doctors sedated her and her baby was forcibly delivered.
The woman was only allowed to see her baby ten times before she was barred from contact. The baby is currently up for adoption.
High Court judge Justice Mostyn sanctioned the forced Caesarean section and adoption, believing it to be in the best interests of the child. A legal team organized by the Italian government is currently appealing Mostyn’s custody decision.
Liberal MP John Hemming expressed his disgust at the treatment of Pacchieri. He called for reform in the family law courts, saying that more and more women were being forced to leave their babies: “taking babies from migrants -- it’s a very big problem that has been swept under the carpet. Partly because it is so awful, people want to turn a blind eye to it.”
Dr Philip Nitschke at his assisted suicide clinic.
A euthanasia clinic has been set up by Australia's leading euthanasia activist, Dr Philip Nitschke, in Adelaide. Police are keeping a close watch on activities there, but Dr Nitschke, who is used to working at the very edge of the law, is said to be doing nothing clearly illegal.
The clinic, a small renovated cottage in the suburb of Gilberton, has information about options for assisted suicide and facilities for video-conferencing with people in Australia and overseas who want to know how to kill themselves without legal risk to loved ones. The cottage was purchased with bequests and gifts from Dr Nitschke's admirers.
The law bans helping people commit suicide, but not advising them. So Dr Nitschke explains how to use the lethal sedative Nembutal, how to obtain it, and how to test its purity. He also has canisters of nitrogen bearing the name of his company, Mad Dog Brewing, which can be used to organise death by asphyxiation. The gas is conventionally used for making home brew but Dr Nitschke's clients are unconventional. "The motto of the company is dispense or dispose ... if you see what I mean," he told the ABC. Police in Queensland and New South Wales are questioning Dr Nitschke over occasions in which the canisters have been found next to corpses.
He also has a mobile consulting unit packed with equipment so that he can inform people who cannot visit the clinic of their "options". He stresses that the gear is used only for information.
Even if assisted suicide is legalised in South Australia, Dr Nitschke does not intend to use the clinic as a thanatorium. "People prefer to die in their own homes," he says.
The clinic is controversial in Adelaide. "Let's bell the cat right from the start: Australia, like much of the Western world, has an ageing population," says Paul Russell, of Hope Australia.
"We must recognise the prospect of euthanasia becoming law in this country could effectively be aiding and abetting elder abuse by relatives. It's not hard to imagine a relative who has been systematically abusing an elder could see euthanasia as the final - and most profitable - card to play for personal gain. It's not hard to imagine someone who has been emotionally abused over time succumbing to the suggestion they 'do the right thing' once their frailty and ailments reach a certain point."
The first workshop on human uterus transplants will take place at the University of Gothenburg, Sweden, in February, led by Professor Mats Brännström. While a couple of transplants have taken place in humans, no live births have yet happened.
There are some serious ethical issues involved. There is a substantial risk for a live donor, more than for the recipient. The children would have to be conceived (at least initially) by IVF. The mother would have to take immune-suppressant drugs as long as she has the womb. There are weighty psychological and cultural issues to be negotiated. See the video for a discussion of this fascinating new technology.