Since then, nearly every week, our subscribers have received a summary of recent developments around the world. We have always felt that the fundamental issue in bioethics is not protocols and standards, but what it means to be a person. From this point of view, bioethics involves the most exciting and influential issues of our times. We are proud to offer our subscribers a hand as they negotiate their own way through the thickets of controversy.
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After helping 450 people to die since 1998, Ludwig Minelli, the 74- year-old Swiss head of the suicide association Dignitas, believes that it is time to expand. In an extended interview with the London Sunday Times Magazine, he says that assisted suicide should be readily available even to those who are not terminally ill and to the mentally ill. "The idea of a terminal illness as a condition for assisted suicide is a British obsession," he says.
The normally reclusive Minelli spoke candidly with the Times reporter, Jocasta Shakespeare. He told her that he supports assisted suicide even for people with Alzheimer's. "We never say no," he says. "Even those suffering from Alzheimer's will have lucid moments in which they may choose to die once a certain point has been reached, such as when they can no longer recognise their children."
It is important for potential suicides to seek technical help, says Minelli, as it is easy to bungle the job. Offering information about effective methods helps to prevent failed suicides from living on as vegetables and the "huge collateral damage" of emergency services, police and medical treatment.
Swiss law permits assisted suicide, but the clients of Dignitas still need to get a doctor's prescription for a lethal dose of sodium pentobarbital. Minelli is challenging this restriction. He is supporting a lawsuit by a man with manic depression who wants to die without a prescription. "If we lose, I'll take the case to Strasbourg [the European Court of Human Rights]," he says. "I tell members suffering from mental illness: I am fighting for your freedom." Although he has helped 42 Britons to die, Minelli is sure that he will not be prosecuted by British authorities. All the key witnesses are either his trusted collaborators or dead. ~ Sunday Times, Apr 16
DRUG WAS CULPRIT, NOT TRIAL DESIGN, SAYS REPORT
A preliminary investigation into the UK drug trial which made six healthy young volunteers critically ill has blamed the drug, not the trial design or the manufacturer. The Medicines and Healthcare Products Regulatory Agency (MHRA) says that the trial of the monoclonal antibody TGN1412 was run according to approved protocols, that the correct dose was used, and that no manufacturing problems or contamination were involved.
The MHRA report suggests that it was just a case of extremely bad luck for the participants. However, critics still insist that the drug should have been tested on one volunteer at a time, rather than giving it to the whole group at once. The response of the MHRA is that dosing all patients within two hours seemed to be reasonable at the time. Given that the human dose was a tiny fraction of what had been given to animals, there seemed to be a wide margin of safety.
The Academy of Medical Sciences, a group of medical scientists from hospitals, universities, industry and the public service, points out that the specificity of antibody action and the novelty of the drug means there is a small body of knowledge to draw on when attempting to predict unwanted effects." ~ BMJ, Apr 23
WHAT'S IN A NAME? AN ETHICAL CONUNDRUM, THAT'S WHAT
Many diseases and syndromes are better known by the name of the doctor who first described them. Take Reiter's syndrome, for example, a disorder that causes three seemingly unrelated symptoms: arthritis, redness of the eyes, and urinary tract signs. Nowadays, however, more and more doctors are calling it reactive arthritis. The reason for the shift in terminology is that Hans Reiter (1881- 1969) was tried at Nuremberg and found guilty of conducting typhoid experiments that killed hundred of prisoners in Nazi concentration camps.
This week, another tainted doctor was fingered in The Lancet, Friedrich Wegener (1907-1990), whose name persists in Wegener's granulomatosis, a rare condition characterised by inflamed blood vessels. Although Wegener, unlike Reiter, was never put on trial, he apparently was involved in selecting Jews from the Lodz ghetto for extermination at Auschwitz. He may also have conducted post-mortems on them. Although the evidence is thin, he was definitely a Brownshirt and a convinced Nazi. The Lancet suggests that linking Wegener with the disease which bears his name "needs balanced discussion within the scientific community". ~ Lancet, Apr 22
WHO OWNS YOUR PROSTATE BIOPSY?
A dispute between a doctor-researcher, some of his patients, and his former university about ownership of tissue samples has ended in a victory for the university. A US district court judge ruled that tissue samples collected by prostate cancer researcher William Catalona over 20 years belong to Washington University in St Louis, Missouri.
The dispute began in 2002 when WU began to make access to the tissue samples more bureaucratic. Catalona had to apply to use samples he had collected himself. Frustrated with the new arrangements, he jumped ship for Northwestern University in Chicago. Before he left, he wrote to all participants in his studies asking them to "release" their tissue samples to him. Although about 6,000 agreed, WU refused, and Catalona and eight of his patients sued.
Now Judge Stephen Limbaugh has ruled that the tissue samples were a gift" under Missouri law and that patients were not entitled to ask for them to be returned. University administrators around the country were relieved, as they feared that a decision in favour of Catalona could have created a nightmarish environment for research. A tissue sample collection is like a great research library, said Dr David Korn, of the Association of American Medical Colleges. "If, at any time, book donors or their heirs could walk into the library and take out volumes, it would be awfully hard to maintain a library of any scholarship value." ~ Science, Apr 21; Guardian, Apr 18
SOME STEM CELLS CURE, BUT OTHERS KILL
Not all stem cells work for the Jedi, scientists have learned. Some work for the Dark Side and cause cancer. In a conceptual revolution in cancer biology, it now appears that rogue adult stem cells could be responsible for cancer's habit of recurring and metastasising. If we are able to eradicate the cancer stem cell, we will be able to cure patients," says Dr Jean-Pierre Issa, of the MD Anderson Cancer Center in Houston.
This novel approach began in the 1990s, when scientists found that some leukaemia cells were more dangerous than others. The challenge is to identify and isolate these cancer-causing cells. This would make it possible to create therapies which target stem-cell defining proteins and destroy the cancer at the source.
Time magazine says that the field of cancerous stem cells is burgeoning. Paradoxically this is happening in part because of President George Bush's opposition to the use of embryonic stem cells. Some Federal funding which might have gone into them is now being redirected into cancer studies. But, as with all stem cell research, therapies are not imminent. "Don't expect anything before five years," says Irving Weissman, of Stanford University, "but be angry if you don't see anything in 15 years." ~ Time, Apr 17
NORTH CAROLINA DOCTORS LEND A HAND IN EXECUTION
The issue of American health professionals cooperating in legal executions has arisen again, this time in North Carolina. On April 21 61-year-old Willie Brown was executed for a murder he had committed 23 years before. To ensure that Mr Brown would not feel undue pain, thus violating his constitutional right not to suffer cruel and unusual punishment, the prison used a brain wave monitor. This enabled a doctor to determine that he was unconscious when he received an injection of paralytic and heart-stopping drugs. It was the first time that a monitor has been used in an American execution.
The technological fix was proposed by a judge hearing an appeal against the execution. He also required that medical personnel be involved. In North Carolina, a doctor and a registered nurse are supposed to observe the executions.
However, the American Medical Association's code of ethics prohibits doctors from participating in executions. Even monitoring a brain wave machine is banned. The North Carolina Medical Board now plans to consider sanctions for doctors who participate in an execution. ~ Reuters, News & Observer (Raleigh), Apr 21
CHILDREN OF DONOR EGGS AND SPERM SELDOM TOLD
A British study has found that most children conceived with donated eggs or sperm are not told about their origins, although most IVF children are. Researchers at the University of Cambridge believe that parents who use donor gametes fail to tell their children because of the social stigma surrounding the practice. Their mothers strongly believe that it would be harmful for a child to learn about their donor origins.
On the other hand, the study, which only involved a few dozen children, suggested that there was no difference in parenting skills amongst the three groups of egg donation, donor insemination and IVF. However, mothers of donor insemination children tended to be over-involved and anxious. Their children were also more likely to be bullied. ~ Reuters Health, Apr 17
HWANG SAGA DRAGS ON… IN THE US
The sorry saga of disgraced Korean stem cell researcher Hwang Woo- suk has an American sequel. Questions are still being raised about the work of Hwang's co-author, Gerald Schatten, of the University of Pittsburgh. A special investigation by the Pittsburgh Tribune-Review found that the university had been lax in overseeing Schatten's research and in following government guidelines for human research.
Although the most contentious feature of Hwang's work was cloning human embryos, how he obtained eggs has also been roundly criticised by bioethicists and fellow scientists. It is mainly this issue which has cast a shadow over Schatten's work. A key question in human subject research is whether the participants can be identified. If they can be, the experiment should have full ethical scrutiny by an institutional review board (IRB). Hwang's violation of this principle was egregious: he even drove one of his junior researchers to a clinic where her eggs were removed.
However, it appears that Schatten did not inform himself adequately about how the eggs were obtained and that his university accepted his story too readily. In fact, the ethical review was very casual. Schatten approached the local IRB a month after his collaboration had already started and declared that no identifiable people were involved. The university officially responded that no scrutiny would be needed on the day after Schatten and Hwang had submitted their notorious paper to Science.
According to Mildred Cho, a bioethicist who was critical of Hwang's study even at the time it was published, long before anyone suspected that it was a fraud, the members of UP's IRB "knew they were reviewing a study that would be controversial, and knew they were reviewing research where the [egg] procurement process would put people at risk. That, in and of itself, could've been an argument to put the study through full IRB review."
The question of why the university treated the ethics of this controversial research in such a cavalier way remains to be answered. Was it mesmerised by the prospect of becoming a leader in cloning research? Was it just carelessness? It is impossible to say. The university barely cooperated with the Tribune-Review's investigation and Dr Schatten will not speak to the media. ~ Pittsburgh Tribune-Review, Apr 23
KANSAS ABORTION DISPUTE
Abortion opponents in the midwest state of Kansas have invoked an obscure law to force an investigation into the death of a mentally- retarded woman after a late-term abortion. A 1970 law allows citizens to initiate a grand jury investigation if they feel that law enforcement officials have failed to act.
In this case, 19-year-old Texas resident Christin Gilbert was brought to a Wichita clinic by her family in January 2005. She was 28 weeks pregnant at the time. The doctor at the clinic, George Tiller, is one of the few American physicians who performs late-term abortions. Three days later she died from an infection. The Kansas Board of Healing Arts has cleared Dr Tiller and his staff. However, activists want to see Dr Tiller charged with involuntary manslaughter and failure to report the abuse of a child. They contend that Ms Gilbert was not able to consent to the abortion. ~ AP, Apr 19
IN BRIEF: organ sales, nurse killer, California
Organ sales: The British Transplantation Society claims that there is growing evidence that the organs of thousands of executed prisoners in China are being removed without consent. It has condemned the practice -- whose existence Chinese officials steadfastly deny -- as a breach of human rights. ~ BBC, Apr 19
Nurse killer: A 25-year-old nurse in the UK has been convicted of murdering two of his patients and causing grievous bodily harm to another 15. The crimes occurred between December 2003 and February 2004 at Horton General Hospital in Oxfordshire. "We may never know what motivated him to select and poison his victims," said a police investigator. "It is clear that he wanted to be the centre of attention and in order to fuel this desire, brought some of his patients to the brink of death and coldly murdered two of them." ~ BBC, Apr 18
California: A California judge has tossed out a constitutional challenge to the legitimacy of the state's US$3 billion stem cell institute. Superior Court Judge Bonnie Lewman Sabraw declared that opponents of the institute had failed to show that it was "clearly, positively and unmistakably unconstitutional". However, until appeals against her decision are exhausted, it will be impossible for the institute to make a bond issue. If all goes well, the institute will begin working in earnest in 2007. ~ AP, Apr 21
BioEdge celebrates its 200th anniversary today. We launched the newsletter at a propitious time -- in August 2001, the week after US President George Bush decided to restrict Federal funding for embryonic stem cells. Apart from the war in Iraq, this move has proved to be one of his most controversial decisions -- and one which put bioethics on the front page of newspapers around the globe.