Friday, 26 March 2004 · Issue 114

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BioEdge 114: Iraqi doctors admit torture and abuses

IN THIS WEEK'S BIOEDGE


bullet 
Iraqi doctors admit torture and abuses: medicine suborned by Saddam's regime
bullet Nitschke documentary in film festival circuit: last days of Lisette Nigot captured on film
bullet Feeding tubes should not be removed, says Pope: man can never become a "vegetable"
bullet UK government funds "saviour sibling": from forbidden to funded in two years
bullet A "saviour sibling" in Norway: public opinion swings against government
bullet Gay marriages open new market for IVF clinic: aggressive approach to "untapped" market
bullet Canada sliding towards Nazi eugenics, says disabled academic: abortions of disabled foetuses will increase
bullet Australian scientists grow new body parts: stem cells grow in 3D
bullet University of Minnesota applies for human stem cell trials: FDA studying proposal
bullet Don't ask me when, say embryonic stem cell researchers: cures on the way -- but not soon
bullet Six US states drafting conscience laws for pharmacists: targeted at morning-after pill
bullet IVF children should be told the facts of life, say IVF doctors: they need to know of their biological parents
bullet Artificial blood raises questions for bioethicists: how can accident victims give informed consent?
bullet IN BRIEF: tests on children; radiation therapy in Australia
bullet ODD SPOT: prisoner's request for euthanasia denied

Iraqi doctors admit torture and abuses

amputated ear of Iraqi A survey of doctors in southern Iraq suggests that a large number participated in human rights abuses such as cutting off ears, falsifying death certificates of tortured prisoners, and even removing patients' organs without their consent. The survey was conducted by the Boston-based Physicians for Human Rights and has been published in the Journal of the American Medical Association. Many doctors were forced to participate by various groups who threatened them or their families. "What would you have done," one doctor asked American researchers, "if you knew that if you refused, your ear would be cut, or you or your family be killed? Tell me honestly, what would you do?"

In an accompanying editorial, Dr Edmund D. Pellegrino, a bioethicist at Georgetown University Medical Center, says that the study reveals "how often ruthlessly tyrannical regimes suborn the uses of medical knowledge for execrable ends". The authors of the survey call for more ethics education but Dr Pellegrino says that this is not a panacea. "More than education is needed," he writes. "Character formation is, in the end, the surest way to inculcate the virtues. This cannot occur unless the culture of the profession is itself ethically rigorous. Even the most virtuous physicians need a supportive culture to remain virtuous." ~ Baltimore Sun, Mar 24   

Nitschke documentary in film festival circuit

Lisette Nigot demonstrates a euthanasia bag The Australian Film Finance Corporation has approved funding for a documentary about the suicide of a 79-year-old French academic in Western Australia after she attended a workshop run by euthanasia activist Dr Philip Nitschke. Filming began three weeks before her death. The documentary, "Mademoiselle Nigot and the Doctor", by Australian director Janine Hosking, was screened at a film festival in the Netherlands last year and is in great demand at festivals around the world. According to a blurb, the documentary "without explicitly taking sides, stays on the side of Nitschke and his supporters."

Ms Nigot's suicide in 2002 created a stir when it emerged that she was not ill, had never had any pain and was not depressed. "My entire life, I've aimed for a high quality of living. Now I want a high quality of dying," she says in the film. "It is great to finally have a choice, after a lot of suffering." ~ Variety, Mar 24   

Feeding tubes should not be removed, says Pope

In a blunt and hard-hitting statement Pope John Paul II has condemned the removal of feeding tubes from patients in a persistent vegetative state, calling it "genuine euthanasia by omission". Such cases have been publicised around the world, in the wake of the battle over the fate of brain-damaged Florida woman Nancy Schiavo.

"A man, even if he is gravely ill or limited in the exercise of his higher functions, is and always will be a man; he will never become a 'vegetable' or an 'animal'," the Pope asserted. "The sick person, in a vegetative state, awaiting recovery or his natural end, has the right to basic health care, and to the prevention of complications linked to his state."

Providing food and water should be considered natural, ordinary and proportional care - not artificial medical intervention, the Pope told members of a conference which had been organised by the World Federation of Catholic Medical Associations and the Pontifical Academy for Life, a Vatican advisory body.

He also spurned "quality of life" arguments as justifications for withdrawing minimal care. "To admit that one can decide on the life of a human being in virtue of a recognition of its quality from outside, is equivalent to recognising that one can attribute to any person from outside increasing or decreasing levels of quality of life and, therefore, of human dignity." ~ Globe and Mail (Toronto), Mar 20   

UK government funds "saviour sibling"

The UK's National Health Service is to pay for the creation of a "designer baby" whose bone marrow or cells will be used to save the life of a sibling. Doctors will conduct tests on an unnamed couple's IVF embryos to find one that is a genetic match for its sibling and is clear of the rare blood disease beta thalassaemia major. (This is a genetic form of anaemia leading to a lack of oxygen in the body.) The procedure has been licensed twice in Britain, but both cases were privately funded. Two similar cases were reported in Australia earlier this month by Sydney IVF.

Only two years ago the novel procedure was being strongly opposed in British courts. Last April a Court of Appeal allowed it under strict conditions -- and now it is receiving government funding. The doctor treating the couple, Simon Fishel, hailed the move as a "visionary" breakthrough which would benefit a number of couples whose children had similar problems. He said that on average three out of every 16 embryos created would be a genetic match and free of the disease.

Dr Fishel also said that saviour siblings were cost-effective. "The drugs and treatment [for children with thalassaemia] could cost 1 to 2 million during their lifetime, or around 50,000 a year, so economically it would make sense to look at alternatives," Dr Fishel said. The cost of a "saviour sibling" is only about 4,000.

Not all medical experts support the funding. Dr Sally Kinsey, of Leeds, who treats children with thalassaemia, told the Sunday Times that "we are discarding embryos that are normal (free of inherited disease but that do not have the right tissue type. I'm not sure we are clear enough about the ethics to be able to fund this on NHS." Another consultant commented: "parents should be having children because they want children, not because they want to create a spare parts factory for other children." ~ Sunday Times, Mar 21; Scotsman, Mar 22   

A "saviour sibling" in Norway

And in Norway, the plight of a six-year-old boy with thalassaemia major may have sparked a political crisis. Opposition parties said that they had done a deal to permit the parents of Mehmet Yildiz to create an IVF baby whose tissue will be used to cure their son -- even though the minority centre-right government opposes it. The health minister has argued strongly against it. "The core of this case is how far we're willing to accept a screening of unborn life in the form of fertilised eggs based on their genetic make-up," says Dagfinn Hoybraaten. He fears that a saviour sibling could pave the way to cloning. He has suggested that the family search for a bone marrow donor outside the family. ~ Reuters, Mar 18   

Gay marriages open up market for IVF clinic

Along with caterers, cake makers, party planners, disc jockeys, florists, limousine companies, travel bureaus, musicians, inter-faith clergy and adoption agencies, New York's third same-sex wedding expo featured a prominent American IVF clinic. Because of the enormous publicity given to gay marriage this year, the expo drew about 20,000 people. "We recently decided to be more aggressive in reaching out to the same-sex community," said Jane Tervooren, a spokeswoman for IVF New Jersey. "We recognised it was an untapped market, and we believe ethically that it's only fair for people who love each other to be abler to have a child together." ~ The Record (Hackensack, NJ), Mar 21   

Canada sliding towards Nazi eugenics, says disabled academic

Dr Tanis Doe By encouraging parents to abort disabled foetuses, the Canadian health care system is sliding towards Nazi-style eugenics, says a professor of social work at the University of Victoria, in British Columbia. Tanis Doe, who is deaf and confined to a wheelchair, says that "women are expected to -- pressured to -- abort pregnancies when foetal disability is diagnosed. But minimal support is available to raise children with disabilities. Eugenics was practised in the UK, Canada and the United States before the rise of Hitler. So what has happened since then is a continuation of the sterilisation practices that we have only recently acknowledged." She noted that nine out of ten foetuses diagnosed with Down Syndrome are aborted in the US and Canada.

Ms Doe says that she is convinced that the search for genetic markers for disabilities will expand the range of prenatal screening and that abortions will increase as a result. ~ Globe and Mail (Toronto), Mar 14   

Australian scientists grow new body parts

Scientists at Monash University and the University of Queensland have found that stem cells can grow into three- dimensional structures in the peritoneal cavity, close to the bowel. In experiments on mice, rats and rabbits they have succeeded in creating new arteries, ureters and bladder patches by inserting objects, such as plastic tubes and small balls, and prompting stem cells to grow around them.

Within 10 years they hope to grow parts of the urinary tract to repair damaged kidneys. "One of the aims is to build a kidney," said Professor John Bertram, of Monash. "It may not be the same size or shape as a normal kidney but we believe that if we put the right cells in the right environment, they'll know what to do." ~ Sydney Morning Herald, Mar 19   

University of Minnesota applies for human stem cell trials

The University of Minnesota is set to become the first public institution in the US to conduct human clinical trials with embryonic stem cells. Researchers are awaiting approval from the US Food and Drug Administration. "This is a tremendous undertaking for a tremendous gain," said the head of the university's Stem Cell Institute, Dr John Wagner. Another official, Frank Cerra, told Minnesota law-makers that not pursuing the research would mean an exodus of talent from the university and the state. "If Minnesota scientists don't perform this cutting edge research, someone else will," he said. ~ AP, Mar 23   

Don't ask me when, say embryonic stem cell researchers

A survey of embryonic stem cell research by the Baltimore Sun has found that the leading American scientists in the field are not making promises about when therapies will be available. "It's foolish to give timelines," says Dr Jeffrey Rothstein, a neurologist at Johns Hopkins University. "When I talk to patients, I tell them we first learn how to build this machine."

Two problems highlighted by the article are purity and finding the ideal time to transplant the cells. Scientists have not been able to guarantee the purity of the cells they transplant -- which is essential to ensure that tumours and unwanted tissue do not develop. Deciding when to transplant also remains an open question. The answer, says Dr John Gearhart, may differ from disease to disease.

An American researcher who helped Korean scientists to clone a human embryo and extract stem cells from it, Dr Jose Cibelli, of Michigan State University, says that he has a ready response for anyone who asks when cures will be ready. "My answer is five years," he said. "It's the same thing as saying I have no idea." ~ Baltimore Sun, Mar 8   

Six US states drafting conscience laws for pharmacists

Six American states are drafting laws which will shield pharmacists from lawsuits and protect them from disciplinary action if they refuse to provide the "morning-after" pill because they are conscientiously opposed to it. Some of the bills also cover the provision of contraceptives. Similar laws protect doctors and nurses in 45 states if they refuse to participate in abortions, but only South Dakota extends similar protection to pharmacists.

The Los Angeles Times points out that the debate may soon become largely academic, as several states, including California, allow the morning-after pill to be sold without a prescription. Federal officials are considering letting a drug called Plan B be sold over the counter across the country. ~ Los Angeles Times, Mar 20   

IVF children should be told the facts of life, say IVF doctors

IVF children should be told how they were conceived, says the ethics committee of the American Society for Reproductive Medicine (ARSM). The ARSM president, Dr Marian Damewood, says that experience with adopted children shows that knowledge of their real biological origins is not as disruptive as it was once thought to be. In the early days of sperm donation, couples were often advised to keep the matter secret. But experience has shown that it is "really harmful" for offspring to discover by chance that they were conceived with a donated egg or sperm. ~ Reuters, Mar 19   

Artificial blood raises questions for bioethicists

The use of experimental artificial blood for trauma victims has raised tricky questions about the importance of informed consent amongst US bioethicists. Supporters of the synthetic, oxygen- carrying liquid, called PolyHeme, say that using it in emergencies could save lives. Opponents say that there can be no justification for doing any research on human subjects without informed consent.

About 15 similar experiments have been approved by the FDA since 1996, when it created a special category of research which can be carried out without patient consent so that doctors can develop emergency treatments. So far, about five cities are using PolyHeme and about 20 hospitals will eventually join the study.

Although unconscious and injured patients may not be able to give informed consent, the ethics committee of participating hospitals must give its approval and local communities must be sounded out. "We think every possible safeguard has been taken to provide maximum protection of public safety," says Steven Gould, the CEO of PolyHeme's manufacturer, Northfield Laboratories.

But Nancy King, a bioethicist at the University of North Carolina, says that "community consent" is no substitute for individual consent. Another bioethicist, George Annas, of Boston University, agrees. He says that the study could be designed to make consent possible by testing PolyHeme only on people who are conscious or whose relatives can be found. "The fact that you're bleeding means you're in bad shape but doesn't mean you can't consent," he says. ~ Washington Post, Mar 23   

IN BRIEF: tests on children; radiation therapy in Australia

  • A panel of the US Institute of Medicine has recommended increased medical studies on children with the proviso that federal rules protecting them from risky or unethical medical experiments should be extended. Safety rules should also be extended to cover private sector research and research not funded by the government, it said. ~ Reuters, Mar 25

  • A study by Australian and New Zealand radiologists shows that in 2002, the latest year for which statistics are available, some people with cancer had to wait up to five months to get radiation therapy. About half of all patients who needed curative or urgent radiation therapy had significant delays and one in three of those who needed palliative radiotherapy to relieve symptoms. ~ Royal Australian and New Zealand College of Radiologists release   

    ODD SPOT: prisoner's request for euthanasia denied

    Jailed chicken escapes in the film Chicken Run A court in the American state of Colorado has refused an inmate's request for euthanasia by lethal injection. Timothy Stoakes, who is serving a six-year, 90-day sentence for reckless driving and eluding a police officer, complains that prison life is "no better than chickens in a chicken farm" and that he is an unnecessary burden on Colorado taxpayers. The Court of Appeals ruled that Stoakes had failed to prove that prison life was "cruel and unusual punishment", which is forbidden by the US Constitution. Both pro-life and euthanasia lawyers have refused to represent Mr Stoakes. ~ Denver Post, Mar 19   

      

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