A feature story in the new online magazine Matter gives an exclusive account of how an American man found a surgeon in Asia who was willing to amputate his healthy leg.

“David”, the pseudonymous protagonist of this strange story, suffers from what psychiatrists are starting to call Body Integrity Identity Disorder(BIID). Another name is apotemnophilia, an overpowering longing to become an amputee. This was originally thought to be a sexual fetish, but it now seems that it is not necessarily sexual.

It was psychologist Gregg Furth who coined the term apotemnophilia in 1977. He suffered from it himself and spent many years acting as a middleman between sufferers and surgeons. In 1998, a botched operation in Tijuana ended in gangrene and death for one of his clients. A Scottish surgeon did a few operations before he was forced to stop in 2000. Then he located a surgeon in Asia who did amputations for US$6,000. After Furth died in 2005, one of his amputee clients, “Patrick”, became the broker.

What explains the obsession with amputation? The article offers a few explanations including the feeling that the limb is not part of one’s personal identity and  a neurological theory about incomplete brain development. 

The ethical question, of course, is whether a surgeon, who is obliged to do no harm, may amputate a perfectly healthy limb.

The doctor in the unnamed Asian city has his doubts, but he is well-paid and his patients have all been delighted to have their limbs removed. But he has to resort to subterfuge – lying to nursing staff, falsifying paperwork, coaching patients to give a false history and so on - to carry out the operation. Matter sums up his ethical reasoning: 

“Dr Lee is convinced that what he does is ethical. He has no doubt that BIID patients are suffering deeply. On the question of whether to amputate to relieve their pain, he invokes the WHO’s definition of health: a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity. As far as he can tell, people with BIID are not healthy, there is no non-surgical cure in sight, and no evidence that psychotherapy helps.”

Actually there seems to be no evidence that it doesn’t either. A 2005 survey found that 65% of 52 BIID patients had not been helped by psychotherapy – but half of those had not told the psychologist of their desires. David was not evaluated by a psychiatrist before his operation. 

Utah has become the first state to allow prisoners, even prisoners on death row, to donate organs. According to NBCNews, “In most states, accepting organs from inmates who die while in custody is permitted only rarely and under strictly controlled circumstances. No state allows donation of organs from executed prisoners.”

The man behind the Utah legislation is Utah state Rep. Steve Eliason. He says that he was inspired by a prisoner executed in 2010 whose request to donate organs was denied. “How disappointing is that, there’s somebody who maybe wants to atone for his sins in some way,” Mr Eliason. “It’s a waste of perfectly good organs that could help others.”

The New York Times gathered six people to debate the issue. Here are a few excerpts:

Transplant surgeon Amy L. Friedman agrees that prisoners should be able to donate, but not death row prisoners. “We are specifically committed to saving lives through transplantation and are loathe to associate with the active termination of healthy individuals.”

Sally Satel, of the American Enterprise Institute, supports the idea. “It’s hardly the solution to the national organ shortage, but donation could be part of the rehabilitation of the select few who want to bequeath their organs to the desperately needy.

Ruth Faden, director of the Johns Hopkins Berman Institute of Bioethics, also believes that prisoner organ donation could save lives but she says that death row donation is going too far. “This new law appears to leave open the possibility that death-row inmates who wish to be posthumous donors could request to be executed by removal of their vital organs. Such a practice is hugely controversial.”

Lawrence O. Gostin, of Georgetown University, opposes all prisoner organ donation: “Free consent is not truly possible under coercive conditions. Beyond the inherently coercive environment, many prisoners are mentally ill, poor and uneducated – and some are very young – rendering them incapable of giving informed consent. While in prison, they face despair and loneliness— exacerbating their emotional distress. As a confined population, prisoners could be ‘educated,’ even persuaded or enticed, by wardens and the state to donate their organs.” 

Scientists at Massachusetts General Hospital in Boston have created bioengineered rat kidneys which successfully filter blood and produce urine. If the technique works with humans, it could do away with the need for donor kidneys.

However, there are still many hurdles to be overcome. The organs produced only a third as much urine as normal kidneys, and disposed of creatinine — a waste product of muscles — 36 times more slowly.

According to a report in Nature News, “The team, led by organ-regeneration specialist Harald Ott, started with the kidneys of recently deceased rats and used detergent to strip away the cells, leaving behind the underlying scaffold of connective tissues such as the structural components of blood vessels. They then regenerated the organ by seeding this scaffold with two cell types: human umbilical-vein cells to line the blood vessels, and kidney cells from newborn rats to produce the other tissues that make up the organ.”

If the technique can be “upscaled” for humans, the implications are momentous. Because the kidneys would be produced with a patient’s own cells, there would be no immune rejection. “In an ideal world, if someone walks into the hospital and has a kidney grown on demand, there’s no donor organ shortage and there are no immune problems,” Ott says.

Fancy having your prescription data sold to pharmaceutical corporations? Well, it happens. Over the past 20 years numerous medical statistics companies have attempted, in various ways, to buy and sell prescription information. The latest attempt was in Australia.

Many Australian doctors this week received letters from data experts IMS Health, indicating that they had purchased prescription information from pharmacies and planned to sell this data to external organisations. "Our clients may be provided with details of your name, contact details and area of speciality," the letter said, adding that doctors could opt out if they chose.

After a deluge of complaints, IMS issued a statement indicating that it would only sell on de-identified information. "We are… taking immediate action to correct this and are re-issuing the letter to medical practitioners," a company spokesman said. "We are committed to protecting individual privacy."

Health experts were alarmed. "I'm very concerned and I think every Australian would be concerned," said Australian Consumer Health Forum chief executive Carol Bennett. "There needs to be informed consent by the parties involved, not an opt-out system."

IMS Health has been widely criticised for similar practices in the US. It fought, and eventually won, a protracted legal battle against legislation in Vermont prohibiting the sale, disclosure and use of prescription records. 

A new Australian think tank has issued a call for the legalisation of euthanasia and assisted suicide. Australia 21 released the summary of a roundtable conducted in January in Brisbane with a number of notables from around the country – many of whom were well-known euthanasia activitists.

“Legislation to legalise assisted dying should be enacted unless there are compelling reasons not to do so. The two major arguments against reform are: 1) concerns that the vulnerable in our community will be placed at greater risk, and 2) the theological view that the divinely conferred sanctity of human life should prevent the intentional taking of life. Neither of these arguments is, in our view, sufficient to resist reform.”

Oddly enough, none of the participants in the seminar highlighted in the report even mentioned the theological view. The few dissenting voices mentioned the dangers of bracket creep, not religious dogmas. Dr David van Gend, a GP and lecturer in palliative medicine at the University of Queensland, wrote:

“If you are bringing in the machinery of mercy killing, you are corrupting two basic elements: firstly the social contract between the state and its most vulnerable citizens, who will not be claiming the right to die but will be accepting the duty to die. Secondly a change would corrupt the relationship between doctors and their patients.”

For the full report, click here. 

Should parents be required to tell donor children of their origins? An influential British think-tank says No. The Nuffield Council on Bioethics this week published a report that says parents of donor-conceived children should be the ones to decide what to tell their children about their conception, but that they need more support in making and following through this difficult decision.

The Council’s report rejects the idea that the state should intervene to ensure that people find out, for example through a mandatory declaration on the person’s birth certificate. Rather, it should the parents, with the support of health care counsellors, who decide to inform their children.

“Exceptional cases aside… it is not the role of the state to take action to ensure that a person knows they are donor-conceived,” the report states.

“We think it is usually better for children to be told, by their parents, about their donor conception, and if parents do decide to tell them then earlier is better”, said Dr Rhona Knight, a GP and the chair of the Nuffield enquiry. “We don’t agree that the decision of what and when to tell should be taken completely out of parents’ hands”.

The finding of the council contrasts with the view of many interest groups around the world lobbying for stricter government regulation. The Nuffield enquiry began in early 2012, and involved health-care experts from several leading British universities.

Currently in the UK, approved sperm donors are not listed as parents on birth certificates, nor is there any indication that that the child was conceived via sperm donation. Either one parent name will be left blank, or the partner of the woman inseminated will be named. Parents are at no stage required to tell their children that they are donor conceived. 

Turkish doctors have announced that the first woman ever to receive a uterus from a deceased donor is two weeks pregnant with an IVF baby. Derya Sert, 22, was born without a womb. Doctors at Akdeniz University Hospital transplanted a womb from a donor in 2011. They waited for 18 months to see if the transplant had been successful. Mrs Sert’s ovaries are functioning and she was able to produce eggs which were fertilised with her husband’s sperm.

One in 5,000 women is born without a uterus. Unfortunately, however, this procedure is not a cure. Mrs Sert still faces the risk of miscarriage and other complications. If the pregnancy goes to term, the birth will be via C-section. At some stage the uterus will be removed to avoid complications and the possibility of rejection. There is a risk that the drugs which the woman needs so that her immune system will not reject the donor womb could cause birth defects. 

The first drug to help people with Down syndrome overcome cognitive deficits is being tested on humans, the Swiss pharmaceutical giant Roche has announced.

Roche has set up a clinical trial with 33 adults to see whether a drug called RG1662 can reverse the effects of a neurotransmitter called GABA which inhibits brain activity. This seems to be the mechanism which is responsible for the memory and learning problems in people with Down's.

This small trial is testing the safety of the drug, but researchers are also examining how it affects the patients’ motor skills, reaction time and memory. The drug has already had good results in mice, according to a paper in the Journal of Neuroscience.

“Our drug research in Down syndrome may offer a novel therapeutic avenue to treat the cognitive deficits in people with Down syndrome, enhance their communications skills and ultimately help them have greater independence in their daily lives,” said Luca Santarelli, of Roche.

Down syndrome affects around one in 650 to 1,000 live births. Worldwide some 30,000 babies are born with Down syndrome each year. People with Down syndrome have a wide range of abilities but the majority have cognitive deficits which can lead to challenges with independence in their daily activities, education and employment. At present, there are no treatment options that address the cognitive impairments associated with Down syndrome.

Article 3 of the United Nations Convention on the Rights of the Child states what everyone considers to be a self-evident truth: “In all actions concerning children, whether undertaken by public or private social welfare institutions, courts of law, administrative authorities or legislative bodies, the best interests of the child shall be a primary consideration.”

Well, almost everyone.

I. Glenn Cohen, a bioethicist at Harvard Law School, believes that “the best interests of the child” is not a concept which is applicable to assisted reproductive technology (ART). In a series of recent papers in leading law journals, he argues that an idea which works well for existing children leads to “vacuous”, “problematic” and “pernicious” conclusions when applied to children who do not exist.

The “best interests of the resulting child” (Cohen abbreviates this as BIRC) are often used to discourage or even to bar progress in ART. Should women in their 60s be allowed to bear children? Should anonymous sperm donation be lawful? Should brother-sister incest be permitted? Negative responses in all these cases invoke the best interests of children which would result. But Cohen disagrees:

“Unless the State’s failure to intervene would foist upon the child a ‘life not worth living,’ any attempt to alter whether, when, or with whom an individual reproduces cannot be justified on the basis that harm will come to the resulting child, since but for that intervention the child would not exist.”

Why is the doctrine of BRIC so common? Cohen suggests that it is a terrible idea which veils discriminatory and judgemental reasoning. ”It is a way of talking about the regulation of reproduction that avoids confrontation with justificatory idioms that are disturbing, controversial, and illiberal”. He believes that the regulation of reproduction is fundamentally flawed and must be radically reformed:

“It is hard to exaggerate the importance of this project: if it succeeds, I will have shown that the prevailing justifications offered for the regulation of reproduction, and most of the regulations they seek to justify, are either intellectually bankrupt or carry with them disturbing and problematic implications such that they are better off discarded… much of the existing law in this area cannot be justified.”

Cohen was just granted tenure at Harvard Law School. He is young, energetic, appealing and brilliant. His subtle and qualified support of issues like eugenics, anonymous sperm donation, commercial surrogacy is certain to have an impact on public debate. Watch this space. 

“Ireland's law and Catholic culture allowed Savita Halappanavar to die” was a typical headline over news last October that a 31-year-old pregnant woman died of septicaemia after pleading vainly with doctors to abort the child. There were demonstrations in the streets and fiery editorials calling for the legalisation of abortion in Ireland.

However, the outcome of the official coroner’s inquest was that Ms Halappanavar died in University Hospital Galway as a result of “medical misadventure”.

The jury unanimously agreed that the cause of death was septic shock from a highly toxic strain of E. coli bacteria, but it also accepted the coroner’s nine recommendations for improving hospital care. The first of these was that the Irish Medical Council should draft new guidelines on when doctors can intervene to save the life of a mother.

Savita’s husband, Praveen Halappanavar, said that he was not satisfied with the verdict and said that the way his wife had been treated was “horrendous, barbaric and inhumane”.

Dr Berry Kiely, of the Pro Life Campaign, a lobby group, said that it was “little short of shameless” that Savita Halappanavar’s death had been exploited to agitate for a change in Ireland’s abortion laws. “It is now clear from the facts presented at the inquest,” he said, “that a number of what the inquest terms ‘systems failures’ and communications shortcomings significantly delayed the moment at which the medical team recognised the seriousness of her condition and carried out the appropriate medical intervention.”

Mr Halappanaver has claimed that he was told that his wife could not get an abortion “because Ireland is a Catholic country". This remark was universally interpreted as offensive religious chauvinism. It emerged that a midwife, Ann Maria Burke, did say this to Savita. However, she told the inquest that she was only trying to console her and explain why the hospitals were reluctant to abort the child, not to insult her.

Many observers have argued that Savita’s death proves that Ireland needs to change its laws on abortion. Writing in The Guardian, Dr Emer O'Toole, of the University of London, for instance, described Ireland as "a little dot of backwardness in a sea of progressive reproductive values". But it is far from certain that legalisation would save lives. Despite -- or perhaps because of-- Ireland's ban, its maternal death rate (6 per 100,000) is one of the lowest in the world, lower, in fact, than countries where it is freely available, like Australia (7), England (12), New Zealand (15), or the United States (21).