In the great tradition of American litigation, will the fate of human embryonic stem cell research be decided in the courts? Earlier this week, US District Judge Royce Lamberth granted an injunction banning Federal funding for the research. This overturns not only President Barack Obama’s relatively liberal guidelines for research on embryonic stem cells, but also President George W. Bush’s more restrictive ones.

The Department of Justice has announced that it will appeal the decision.

The news has appalled supporters. A New York Times editorial described the injunction as “a huge overreach” of judicial power which would be “a serious blow to medical research” if it succeeds. The head of the National Institutes of Health, Francis S. Collins, said that it pours sand in the engine of medical progress.

His agency has already declared that 50 pending requests for new funding will not be considered. About a dozen other requests for US$15 million to $20 million which were likely to be approved have been frozen. Another 22 grants of about $54 million which are due for renewal in September will be cut off.

The decision was criticised as politically inspired. Jonathan Moreno, a University of Pennsylvania bioethicist with close ties to the Obama Adminstration commented disgustedly: “What the opposition to this legitimate and globalized field has been unable to do through science and the ballot box they are trying to do through the courts.” Slate columnist William Saletan was so disconsolate that he moaned: “I never thought I'd say this, but I'm starting to miss George W. Bush.”

The lawsuit was brought by two researchers who work exclusively on adult stem cells, which do not involve the destruction of embryos. James L. Sherley, a biological engineer at Boston Biomedical Research Institute, and Theresa Deisher, of Ave Maria Biotechnology Company contended that the Dickey-Wicker Amendment, which was first passed in 1996 and has been renewed every year since as a rider to appropriations bills for the Department of Health and Human Services, forbids funding for hESC research.  

President Bush and President Obama differed on their views on the destruction of human embryos for research. But they did agree that destroying them and using the by-products were two entirely different issues. All subsequent regulation has rested upon that assumption. No Federal funding has ever been made available for the destruction of embryos, but work on embryonic stem cells was supported by both presidents, albeit in different ways.

But Judge Lamberth firmly declared that this assumption is wrong.

“Despite defendants’ attempt to separate the derivation of ESCs from research on the ESCs, the two cannot be separated. Derivation of ESCs from an embryo is an integral step in conducting ESC research… If one step or ‘piece of research’ of an ESC research project results in the destruction of an embryo, the entire project is precluded from receiving federal funding by the Dickey-Wicker Amendment.”

True, two Presidents and Federal agencies have been interpreting the Amendment differently for nearly a decade, but Judge Lambert says that this is clearly mistaken: “as demonstrated by the plain language of the statute, the unambiguous intent of Congress is to prohibit the expenditure of federal funds on ‘research in which a human embryo or embryos are destroyed’”.

What happens now?

If an appeal fails in the courts, the whole embryonic stem cell debate will go back to Congress. Whether the Obama Administration will have the stomach for leading the charge in a new battle is anyone’s guess. With the Democrats facing stiff headwinds as mid-term elections approach, they may decide to defer a highly polarizing stem cell debate, leaving many biologists very down in the dumps.  

Embryonic stem cell research will not grind to a halt – it is still being funded by private investors, state governments, and universities -- but it could slow to a very slow walk.

There is a potential winner in this: California, which has hundred of millions of dollars of funding to splurge on researchers based in the state. The president of the California Institute of Regenerative Medicine, Alan Trounson, declared that the “deplorable” injunction was not altogether deplorable for California: “This decision leaves CIRM as the most significant source of funding for human embryonic stem cells in the US.”

There is more spin in discussions of embryonic stem cells than in the average gyroscope. Even eminent scientists tend to glide over the disadvantages of their preferred cell type. But quite consistently throughout years of debate, four uses for these cells have been mentioned: curing dread diseases, testing drugs, doing genetic research, and benchmarking performance. What no scientist in favour of using them has ever mentioned is that someday they would no longer be needed.

Until now. Dr Rudolph Jaenisch, a leading and often-quoted researcher at the Massachusetts Institute of Technology, told the New York Times that scientists currently need embryonic stem cells to benchmark the performance of adult stem cells and induced pluripotent stem cells. But then he admitted that this would not be the case for ever. “Things are very much in flux,” he said. “We will probably need human embryonic stem cells for a while. And then we probably will not need them anymore.”  ~ New York Times, Aug 25

 

Here’s another new film about the perils of genetic engineering. Information about Jim is sketchy at this point – it will be released in October – but it has something to do with corporate control of science. The protagonist takes frozen eggs to Lorigen to have them genetically engineered. The commercial for the company is a tour de force of creepy commercialism.

A technique used in half of American IVF births causes many infertile fathers to pass on their infertility to their sons – sometimes along with other genetic defects, according to an article in the Boston Globe.

A million babies around the globe have been born with ICSI. But hundreds, and perhaps thousands of the boys will be born infertile.

“Thanks to IVF and ICSI many babies have been born who wouldn’t have otherwise existed, and this has brought happiness to countless families. But unlike any other kind of medical intervention, which can be tested for safety and efficacy on the population it will affect, fertility techniques by design can’t be tested on the resulting babies until after they are born. To put it bluntly, we’ve chosen as a society to carry out a big safety experiment on the first generation of children we’ve created with these methods.”

US medical guidelines urge doctors to suggest that men with very low sperm counts be offered genetic tests before ICSI. But very often these guidelines are not followed. And many infertile men do not want to be tested, anyway.

What are the ethics of this, asks Sylvia Pagán Westphal.

“Infertility is, at the very least, a medical condition that causes significant emotional distress and, when fertility treatments are sought, puts the woman, and often her male partner, through medical procedures that are not without risk. Is it ethical to knowingly pass down this condition to a child? Does a couple’s right to reproduce trump that of their future children?”  ~ Boston Globe, Aug 8

The UK fertility regulator may radically commercialise IVF to enable British women to be paid thousands of pounds for donating their eggs. The supply of eggs and sperm for infertile couples dried up as soon as the government removed donor anonymity in 2005. Now there are long waiting lists and many couple resort to IVF clinics overseas.

Regulations might also be relaxed to allow one man’s sperm to create up to 20 children despite the danger of unwitting incest. The current limit is 10.

"We want to remove obstacles to donation," an HFEA spokeswoman said. "There are waiting lists of various lengths for people wanting to get access to treatment with donor eggs or sperm. We want to see if our policies are contributing to an unnecessary delay."

A public consultation on a market in gametes will begin in January 2011 and will run for three months. The results will be made available in May 2011.

Professor David Jones, director of the Anscombe Bioethics Centre in Oxford, and an adviser to Catholic bishops told the Guardian: “The church finds IVF ethically problematic and donor conception is worse… because it means the mother and father of the child won't be its biological parents. So when you start to pay people for it, it's even worse because you are encouraging, in the crudest kind of way, people who aren't going to be involved in the rearing of children to donate sperm or eggs.

“It's not just the church – a lot of people find the idea of payment problematic, because it's demeaning to procreation, that you should pay someone to take their child from them biologically."

Researchers have discovered that adult stem cells from the brain could be used to restore movement to paralysed patients. Experts say the breakthrough could lead to the creation of a spare set of matching cells which could then be used to “repair” damage to the spinal cord.

The study, conducted by researchers from the Nara Institute of Science and Technology, Japan, involved transplanting “neural stem cells” (NSCs) to mice with severe spinal cord injuries. They were then administered valproic acid, used to treat epilepsy. The acid promoted the transplanted stem cells to generate nerve cells rather than other types of brain cell.

According to Prof Kinichi Nakashima, who led the study, the method could be developed as an effective treatment for serious spinal cord injuries. “The body’s capacity to restore damaged neural networks in the injured… is severely limited,” he told the Telegraph. “Although various treatment regimens can partially alleviate spinal cord injury, the mechanisms responsible for symptomatic improvement remain elusive. These findings raise the possibility that (stem cells)… can be manipulated to provide effective treatment for spinal cord injuries.”

Tamir Ben-Hur from Hadassah Hebrew University Medical School, Israel, said that despite the study’s “impressive” results, further work was necessary “before it can be determined whether this approach will work in human patients”. ~ Telegraph, Aug 17

British scientists claim to have turned stem cells from spare IVF embryos into red blood cells in a project with the goal of manufacturing synthetic blood on an industrial scale. It has been said to be the first time in Britain that human embryonic stem cells have been used to produce human red blood cells.

The £3m project is aimed at developing an alternative source of O-negative blood, the universal blood type that can be used by most people without fear of rejection.

The project has used over a hundred embryos left over from IVF procedures to establish several hESC lines. One of the lines, called RC-7, has been converted from embryonic cells into blood stem cells and then into functioning red blood cells containing the oxygen-carrying pigment haemoglobin.

The project is in its very early stages, with the first clinical trials of synthetic blood made from ESCs planned to occur within the next five years. The plan is to then scale the manufacturing process to produce over two million pints per year using industrial bio-reactors.

Professor Marc Turner, director of the Scottish National Blood Transfusion Service in Edinburgh and leader of the project, said synthetic blood produced on an industrial scale would eliminate the problem of blood shortages and the transmission of infections between donors and recipients.

Some fundamental issues remain to be resolved. For example, scientists have to ensure that the cells are cultured with laboratory reagents that have not come into contact with animal cells, because these could contaminate the blood cells with animal diseases. The project is also yet to gain regulatory approval. In addition the use of hESCs themselves has been the subject of widespread bioethical debate. ~ Independent, Aug 16

A quadriplegic man who made a public plea to Hong Kong’s leader for the right to die six years ago has changed his mind. Tsang Sui-pun became paralysed from the neck down after he fell while rehearsing for a gymnastics display in 1991, badly injuring his spine. In 2004, using a chopstick in his mouth to type, appealed to the chief executive and legislators of Hong Kong for assistance in committing suicide.

Now he is going home. Mr Tang, now 41, smiled at reporters as he left hospital in a wheelchair. He said he had faced many difficulties since the accident and was happy to be on his way home. Carers will attend to him, and the monthly rent for his specially-adapted public housing flat will be paid by the government.

Assisted suicide is illegal in Hong Kong, and widespread debate and media coverage followed his moving statement. Donations flowed in to pay a taxi fare for his father’s daily visits to the hospital to feed him his favourite soup. Later on, Tang changed his mind and decided he wanted to life, although he is adamant that the choice of life or death is a basic human right. ~ BBC News, Aug 20

There are so many developments on the euthanasia front in the UK this week that they are best grouped together.

Former BBC producer Ray Gosling made the dramatic claim earlier this year that he had euthanased one of his numerous gay lovers more than 20 years ago. “I killed someone once. He was a young chap, he had been my lover and he got AIDS… I picked up the pillow and smothered him until he was dead. The doctor came back and I said ‘He's gone’. Nothing more was ever said.”

There was a great hoo-haa in the media over his teary reminiscences and the police immediately interrogated him. It turns out that probably Mr Gosling did no such thing and he will be charged, not with murder, but with wasting police time. A Crown Prosecution Service spokeswoman said there is “sufficient evidence” to prove he was lying. The Police are said to be furious that the BBC did not check out the story. ~ Daily Mail, Aug 20

An 84-year-old retired Scottish doctor will not be prosecuted for assisting a suicide. Dr Libby Wilson, a member of Friends At The End (FATE), was arrested last September after multiple sclerosis sufferer Cari Loder, took her own life using a helium cylinder and a hood. Police indicated that Dr Wilson did give the woman some advice but that it was not significant in carrying out the suicide. Dr Wilson was “unrepentant” and jeered, “What jury would have convicted me?” ~ Scotsman, Aug 17

A new right-to-die society has sprung up in the UK. The Society for Old Age Rational Suicide (SOARS) wants to press the case for assisted suicide for people who are not terminally ill. “After eight or nine decades, many people rightly decide that their lives have been fully lived, and now they have a life which, for them, has finally become too long,” its website declares.

The leader of the group is 79-year-old Michael Irwin, who is now being dubbed “Dr Death” by the British media. He is a controversial figure who was deregistered as a doctor after he helped a friend to die in 2005. He admits having helped several people to commit suicide. ~ London Telegraph, Aug 16

A clear North/South divide is emerging in attitudes towards male circumcision. In May the Dutch Royal Medical Association became the first national medical group to declare that the procedure is both medically unnecessary and an abuse of the rights of the child, in the same way as female circumcision, or female genital mutilation.

However, the Dutch have decided to actively discourage circumcision rather than to ban it, as that could drive the procedure underground. About 15,000 boys are circumcised each year.

On the other hand African countries are actively encouraging circumcision because trials in 2007 in Kenya, Uganda and South Africa showed that it dramatically reduced the risk of infection with HIV/AIDS. According to a report in the BMJ, 14 countries in southern Africa are promoting circumcision with radio and television campaigns.

In Swaziland, where HIV prevalence is 45%. circumcision is even regarded as “crucial to the survival of the state”. Botswana plans to circumcise all boys by 2012. Even Rwanda, where HIV prevalence is only 3%, is promoting it as a cost-saving public health measure.

However, the Dutch doctors are sceptical of the African data. They believe that while it might delay infection, it will not prevent it. They also say that there are some complications which cannot be ethically justified for a “medically futile” procedure.

In the UK, Australia and the US, the trend is away from circumcision. The Australasian Association of Paediatric Surgeons,  for instance, describes circumcision as "inappropriate and unnecessary" but allowable in children over 6 months old when parents "hold a very strong opinion.” ~ BMJ, Aug 17  

One of the more interesting figures in contemporary bioethics is Oxford’s Julian Savulescu. An Australian who is a former student of Peter Singer, he boldly rides utilitarian theories wherever they wander, regardless of unsettling this might seem to his readers. As a fan of eugenics and human enhancement, he is a weathervane for bioethics which is sceptical of human dignity. So it was interesting to read on his blog that he has rejected one of the cornerstones of Enlightenment humanism, equality:

“Equality is an ideal born of the vice, or one of the seven deadly sins, of envy. It has no intrinsic value but panders to our vicious nature to be envious of others…

“Equality has no intrinsic value. Our commitment should be to the lives of individual people not to human ideals like equality.

“Equality is a dominant moral ideal in contemporary society. Egalitarianism is the stated principle for the [National Health Service}: equal treatment for equal need. Equality might be a good rule of thumb but it should not be a final regulative ideal. “ ~ Julian Savulescu’s blog, June 17

Last year British doctor and philosopher Raymond Tallis published a cranky article in The New Humanist about “neurotrash” which complained about the exuberant proliferation of neuros: “If you come across a new discipline with the prefix ‘neuro’ and it is not to do with the nervous system itself, switch on your bullshit detector. If it has society in its sights, reach for your gun. Bring on the neurosceptics.”

Heeding his summons, Eran Klein, of Oregon Health and Sciences University, has published an article in the journal Neuroethics entitled “Is There a Need for Clinical Neuroskepticism?”

“It is far from clear that a future world in which everyone wears neurospectacles is the best one available to us. Neuroscience has changed the way we understand ourselves and no doubt will continue to do so, often for the better. But it provides just one way to encounter the world. Enveloping ourselves in a discourse of the ‘neuro’ — though perhaps seductive at times — can also crowd out other valuable ways of talking about and understanding ourselves and our place in the world. Sometimes talk of neurons, synapses, and circuits must give way to talk of open futures, distributive justice, and perfectionism. A healthy dose of neuroskepticism may be just what’s needed for medicine to travel along neurotechnology’s golden road.” ~ Neuroethics, Aug 17

German doctors and medical historians have criticised the German Medical Association’s present and previous presidents for omitting the Nazi past of another former president in a recent obituary in Deutsches Ärzteblatt, the German counterpart of the BMJ. The article concluded by stating that Hans Joachim Sewering "rendered outstanding services to the protection of ethical values in medical practice".

The German medical community’s considerable efforts to come to terms with the Nazi past make this omission incomprehensible, say 81 signatories to an open letter.

The editor countered that a previous short article had mentioned Sewering’s Nazi past. He also said the German Medical Association and the Deutsches Ärzteblatt had tried hard to shed light on the Nazi period by  commissioning independent research projects.

Professor Sewering was a member of both the Nazi Party and the SS. He began work in a lung hospital for disabled children near Munich in 1942. Between June 1943 and February 1945 he sent at least nine children to another hospital known for euthanasia. Five of them died there from malnutrition. However, witnesses accused him of involvement in the intentional starvation and drugging of over 900 mentally and physically disabled patients.

After the war, he became an official in the German and Bavarian Medical Associations and was president of the German Medical Association from 1973 to 1978. His Nazi past emerged in 1993 when he sought to become president of the World Medical Association. He failed but remained an honoured member of the national association and received many distinctions. ~ BMJ, Aug 16

After a three-year investigation Harvard University has admitted that a renowned expert on the evolution of morality has engaged in scientific misconduct. Professor Marc Hauser, a popular lecturer, and an influential exponent of the neurological basis for human moral codes, is alleged to have been responsible for “eight instances of scientific misconduct”.

University authorities cited “problems involving data acquisition, data analysis, data retention, and the reporting of research methodologies and results” but gave few details. However, one of his research assistants told the Cronicle of Higher Education that “the professor was reporting bogus data and … aggressively pushed back against those who questioned his findings or asked for verification”.

Apparently his colleagues complained to the Universtiy when they noticed that Professor Hauser fabricated responses made by rhesus monkeys when he tested whether they could recognise speech patterns.

Professor Hauser told The New York Times, “I acknowledge that I made some significant mistakes”. He said that he was “deeply sorry for the problems this case had caused to my students, my colleagues and my university.” ~ New York Times, Aug 20  

Katrina Clark, 21, and Lindsay Greenawalt, 25, were both conceived with donor sperm and raised by single mothers. Katrina succeeded in finding her biological fathers and Lindsay failed. According to a report from Associated Press, they are part of an increasingly outspoken generation of sperm donor offspring. Speaking from experience, they have advocated publically for the rights of sperm donor children, in particular their right to know their biological fathers.

“The loss associated with being donor conceived is something that I will carry for the rest of my life, and that to deliberately create a human being with that loss is unethical,” Ms Greenwalt wrote recently on her blog, Confessions of a Cryokid.

All she knows about her father is that he is 49, attended college, and has brown hair and greenish eyes. She knows a few medical details, thanks to a recent update sent by her father to the Xytex sperm bank in Augusta, Georgia. “He knows I'm looking for him — and he doesn't want to make contact,” Greenawalt said.

Ms Clark found her father fairly quickly. However, their communication “has been pretty much nonexistent”, and they have not met face-to-face. "I still wonder about him," she added. "There's so much about him I still don't know."

US sperm banks are increasingly offering identity-release policies, in which donors agree to allow their offspring to contact them once they reach age 18. However, many donors still choose to remain anonymous. A past president of the Society for Assisted Reproductive Technologies, Dr Jamie Grifo of New York University's Fertility Center, told AP that it is not a good idea. "It may not be a popular point of view, but when these decisions are made by donor and a parent, the child doesn't have a say," he said. "If the contract is for it to be anonymous, it should remain anonymous, and the child just has to deal with that." ~ AP, Aug 16

The University of California, Berkeley will not release personal genetic information to incoming students who participated in an orientation program about genetics. The program “Bring Your Genes to Cal” was criticised by the California Department of Public Health because state law prohibits gene testing outside a medical setting.

Mark Schlissel, dean of biological sciences, said he disagreed with the department’s ruling that advance approval for testing was required from physicians, and that the testing should be done in clinical labs with special licences rather than by university technicians. He also argued that the project should be exempted from the state rules because it was an educational exercise.

Privacy advocates and ethicists had criticised the test as a disturbing use of genetic data. Some students felt that they were being quietly coerced into participating, and that their saliva samples and resulting personal information would not be sufficiently protected. ~ LA Times, Aug 13

The US Food and Drug Administration has embarked upon a legal battle to extend its authority over stem cell treatments. It has enjoined a Colorado company, Regenerative Sciences, from treating patients with stem cells from their own bone marrow or synovial fluid. These are being injected to treat fractures, torn tendons and other ailments. The clinic charges patients US$7,000–9,000 and does about 20 procedures every month.

Christopher Centeno, the medical director of the company, is ready for a fight. He disputes the FDA’s jurisdiction. Since the company uses a patient’s own cells, as IVF clinics do, it is none of the FDA’s business.

Both sides realise that the case could be a landmark decision. Conventional stem cell researchers are wary of shady operators who claim therapeutic benefits for stem cells without much research. Douglas Sipp, of the International Society for Stem Cell Research, worries about what will happen if Centeno’s company wins in the courts. "Companies would likely feel empowered to ignore requirements for demonstrable safety and efficacy of autologous medicinal products, creating an 'anything goes' atmosphere," he told Nature.

And Centeno agrees: "If we win, the entire regulatory structure for autologous cell processing, with or without culture, will be rewritten such that any physician using good practices and treating patients responsibly can use stem cells as part of his or her medical practice," he says. ~ Nature, Aug 17

Australia may crack down on the billion-dollar cosmetic surgery industry’s pitch for teenage business. According to the Sunday Age, a government report recommends that teens have mandatory psychological examinations and a three-month cooling-off period.

Incentives such as gifts, discounts or loans would be banned together with advertising using “before and after” shots of breast enlargements, nose jobs and tummy tucks.

The Australian Health Ministers' Advisory Council says there is a “disturbing trend” in young people seeking cosmetic surgery and treatments such as Botox, liposuction and laser therapy. “Demand for such procedures is fuelled by lifestyle choices to enhance physical appearance and boost confidence, rather than medical need,” the report states.

At the moment, any registered doctor can advertise as a cosmetic surgeon. The report recommends that only doctors formally trained in plastic surgery be allowed to describe themselves as cosmetic surgeons. ~ Sydney Morning Herald, Aug 15

A spinal fluid tap may be 100% accurate in predicting whether a patient will develop Alzheimer’s disease, according to a study published in Archives of Neurology.

According to the New York Times, until now the presence of the disease could only be confirmed after an autopsy, although it begins ten or more years before symptoms appear. But a simple spinal tap could predict whether someone has the progressive and incurable brain disease and identify them as potential subjects for research into cures. “This is what everyone is looking for, the bull’s-eye of perfect predictive accuracy,” said Dr Steven DeKosky, dean of the University of Virginia medical school.

The news was widely reported in the media and shot to the top of the most-read articles in the Times. The conumdrums of a screening test for Alzheimer’s were clear to everyone. Would healthy people want to know that they have a disease for which there is no cure? How would they react?

For researchers, the benefits are obvious. It would be far more efficient to test potential treatments on people in the initial stage of the disease. In an accompanying editorial, two experts declared that spinal taps may become a routine “screening test to identify clinically healthy individuals at risk”. This would be helpful in developing “early application of treatments to delay onset of symptoms or slow progression of cognitive impairments”.

Bioethicist Jonathan Moreno, of the University of Pennsylvania, pointed out in The New Republic that the existence of an accurate and relatively simple test creates many policy problems. As many as 5.1 million Americans may have Alzheimer’s. How will that affect their health insurance? How will it affect families? Will it lead to suicide or will it encourage people to put their affairs in order? ~ New York Times, Aug 9

Morality is a tricky business. If you are an expert in preaching about it, people tend to hold you to a higher standard of probity. Perhaps this is what has made allegations of academic misconduct against one of the leading exponents of the “new science of morality” so disturbing for Bostonians. 

Harvard professor Marc D. Hauser has persuasively argued that no action is inherently wrong. "We generally do not commit wrong acts because we recognize that they are wrong and because we do not want to pay the emotional price of doing something we perceive as wrong," he says. As an evolutionary biologist, he is fascinated by the idea of evil and thinks that his research can shed light on its origin and its attraction. “I believe that science, and scientists, have an important role to play in shaping the moral agenda. We have an obligation to use facts and reason to guide what we ought to do,” he contended forcefully in a recent essay on The Edge.

Unfortunately, Professor Hauser has just taken a year-long leave after Harvard found evidence of faked results in some of his research. What sparked the investigation was a 2002 paper in the journal Cognition on whether monkeys learn rules. It is now being formally retracted because the data do not support the findings.

This is not the only paper under a cloud. Last month the prestigious British journal Proceedings of the Royal Society B published a correction to one of Hauser’s papers and now Science is looking at a 2007 paper.

“This retraction creates a quandary for those of us in the field about whether other results are to be trusted as well, especially since there are other papers currently being reconsidered by other journals as well,” Michael Tomasello, co-director of the Max Planck Institute for Evolutionary Anthropology in Leipzig, Germany, told the Boston Globe.  “If scientists can’t trust published papers, the whole process breaks down.”

Professor Hauser has been one of Harvard’s most popular teachers and is currently working on a new book with the provisional title, “Evilicious: Explaining Our Evolved Taste for Being Bad.’ ~ Boston Globe, Aug 10

Elizabeth Comeau, 29, the first American IVF baby, gave birth to her first son last Friday. He was born at 2:05 am, weighing 7 pounds, 12 ounces.  In an article she wrote last week for the Boston Globe, she said that she doesn’t want her son to have the same worldwide publicity that she had as a child. She even changed her surname from Carr to Comeau to have “a couple of years under the radar.”

She said that while her childhood was not normal, her life now is. “I had a normal conception and pregnancy despite my abnormal childhood. And early yesterday, my husband and I had a baby boy ‘the normal way,’ proving (I hope) that I’m just like everyone else,” she said.

Comeau, a journalist for the Boston Globe, said she wrote about her story to help others learn about IVF - at the risk of her own privacy. “I follow the same principle my parents did: If my story helps couples or families learn about in-vitro fertilization, then the loss of privacy is worthwhile. People who have fertility issues deserve to know they can have healthy, normal babies,” she wrote. ~ Boston Globe, Aug 6

The official installation of UNESCO’s first francophone Africa chair of bioethics took place at the University of Bouaké in the Côte d’Ivoire capital of Abidjan. For English-speaking African countries, the bioethics chair is based at Egerton University in Kenya.

At the ceremony in July the university’s president Lazare Poamé, a chief proponent of studies in bioethics in the mid-1990s, described the installation as “one of the greatest intellectual events in the history of this university”. ~ University World News, Aug 8

The Department of Defense is investigating whether 80 wounded US service members in Iraq were used improperly as test subjects for a treatment for brain injuries.

The study, sponsored by San Diego’s United States Naval Medical Centre, was designed to test whether a drug designed for treating Tylenol overdoses could also be used to reduce the harmful effects of traumatic brain injury, such as brain function problems and balance loss. It is not clear whether anyone was hurt as a result of administration of the drug. The US Navy is also conducting an inquiry into both alleged research misconduct and potential violations to the Uniform Code of Military Justice. All research has been frozen for the time being.

The delay has incensed Congressman Patrick Kennedy, a Rhode Island Democrat, who has been briefed privately on the study. He said the preliminary results suggest the treatment could be helpful. “The irony is that the safeguards [to protect human test subjects] are blocking, it seems to me, the quick implementation of an intervention that could help mitigate the disabilities that result from the signature wound of the war,’’ said Kennedy. Kennedy is urging the Department of Defense to release the study or arrange for its review by a panel of neuroscientists who can judge whether the findings warrant further investigation. ~ Boston Globe, Aug 3

While the US Transport Security Administration claims that images from electronic body scans “cannot be stored or recorded,” a CNET News report has revealed that some federal agencies are saving tens of thousands of images.

Body scanners are increasingly found in airports and courthouses and use an assortment of technologies. According to CNET, the US government favours body scanners because they can detect concealed weapons better than traditional magnetometers. The report also said the US Marshals Service admitted to saving thousands of images recorded from a security checkpoint in a Florida courthouse.

Critics have likened body scanners to a virtual strip search, because they penetrate clothing and provide a highly detailed image of the subject’s anatomy.

This debate over privacy has been bubbling since the days of the Bush administration, but it came to the boil three weeks ago when Secretary of Homeland Security Janet Napolitano announced that practically every major airport in the US would be equipped with body scanners. The updated list includes New York City, Dallas, Miami, San Francisco, Seattle, Philadelphia and Washington.

The Electronic Privacy Information Center, an advocacy group based in Washington DC, has filed a lawsuit to a federal judge to grant an immediate injunction to pull the plug on this installation of body scanners. EPIC describes the program as “unlawful, invasive, and ineffective.”

William Bordley, an associate general counsel with the Marshals Service (part of the Justice Department) admitted in a letter to EPIC last week that "approximately 35,314 images... have been stored on the Brijot Gen2 machine" used in the Orlando, Fla. Federal courthouse.

The TSA maintains that body scanning is legal: "The program is designed to respect individual sensibilities regarding privacy, modesty and personal autonomy to the maximum extent possible, while still performing its crucial function of protecting all members of the public from potentially catastrophic events." ~ CNET News, Aug 4

What should a doctor do if a patient with a psychiatric condition asks for an unnecessary procedure which will probably do no good and could even leave them worse off? If you are a cosmetic surgeon, you will probably do it anyway, according to a study by researchers at Rhode Island Hospital and Children's Hospital of Philadelphia.

They found that many people who suffer from body dysmorphic disorder (BDD) come back repeatedly for cosmetic procedures.  But only 2% of them actually reduced the severity of BDD. Despite this poor long-term outcome, physicians continue to comply with the wishes of people suffering from BDD. The most common surgical procedures are rhinoplasty and breast augmentation.

BDD sufferers are obsessed with imaginary or slight defects in their appearance. Instead of seeking psychiatric help, they demand cosmetic surgery. And the surgeons willingly provide it. “In a survey of 265 cosmetic surgeons, only 30% believed that BDD was always a contraindication to surgery," says Dr Katharine A. Phillips, a co-author of the paper. ~ Annals of Plastic Surgery, Aug 11

The Swiss are thinking of liberalizing their liberal legislation on assisted suicide. At the moment, assisted suicide is legal so long as the helper is motivated by altruism, although the legality of helping people who are not terminally ill is unclear. As a result a number of organisations have sprung up to help people end their lives. So many people come from other countries that some Swiss fret about “death tourism”. Hence there have been proposals at least to limit assisted suicide to terminal cases.

However, Justice Minister Eveline Widmer-Schlumpf is thinking of extending the scope of assisted suicide rather than reducing it. She told the Swiss newspaper Sonntags Zeitung that “we want assisted suicide not only for the terminally ill, but others as well… We cannot simply exclude the chronically ill from assisted suicide. It should be permitted under certain conditions.” She plans to present new proposals to the parliament. ~ Swissinfo, Aug 8;

Should a child born three years after his father’s death be eligible for survivor Social Security benefits? This is one of the knotty and novel questions which flow from advances in artificial reproductive technology and it is being studied right now by the Utah Supreme Court. Gayle Burns, a 38-year-old widow in Murray, Utah, is suing the Social Security Agency over a US$35,000 survivor benefit. She gave birth to her son Ian in 2003, three years after her husband Michael deposited sperm during his losing battle with non-Hodgkin's lymphoma and two years after died.

Initially, Ian was awarded a survivor benefit, but last August the Agency decided that Ian was not Michael’s son under Utah law and demanded a refund. To comply, Mrs Burns was forced into personal bankruptcy. Now she and Ian want it back.

Sonny Miller, a Minnesota lawyer who has dealt with issues arising from posthumous conception, told the Wall Street Journal that the Agency’s reluctance to pay benefits in these cases was understandable. Benefits are paid to help families who have experienced a sudden death and loss of income. "It's not meant as something you expect to get when you make the decision to have a child," he said.

Most states define the parent-child relationship in terms of traditional reproduction, so that a parent must be alive at the time of conception. However, now that sex and reproduction have decoupled, legal problems arise. Only 11 states take new methods of conception into account. Courts in Massachusetts, New Jersey, Arizona and Iowa have ruled that such children are entitled to Social Security benefits, but Courts in Florida, New Hampshire and Arkansas have ruled that they are not entitled. ~ Salt Lake Tribune, Aug 5; Wall Street Journal, Aug 3

Britain’s fertility watchdog, the Human Fertlitsation and Embryology Authority, is to be abolished as part of a cost-cutting drive by the UK’s new coalition government. Health secretary Andrew Lansley announced last month that the HFEA and other health quangos will be merged or culled in an effort to save costs and red tape within the NHS. The HFEA will continue its work for the time being but will transfer its functions by the end of the current parliament.

The Government’s current plan is to split the HFEA’s work between a new research regulator, the Care Quality Commission, and the Health and Social Care Information Centre. The HFEA will take a long time to sink beneath the waves, but by April 2013 its functions should be absorbed by other bodies.

The HFEA, which regulates IVF and embryo research, has influential friends, so intense lobbying can be expected, although it has also has many critics who accuse it of being unduly permissive. "I'm absolutely astonished at this," Ruth Deech, an independent member of the House of Lords and former chair of the HFEA, told Nature. "I think our standing in the world will be reduced." In 2007 a cross-party parliamentary inquiry concluded that the case against merging the HFEA with another body was "overwhelming and convincing".  

The HFEA is just one of dozens of government bodies which the new government wants to do away with, including the UK Film Council, Museums, Libraries and Archives Council, the Health Protection Agency, and the Advisory Committee on Historic Wreck Sites. ~ Nature, Aug 3

The tumultuous feelings parents have when they first learn their child will be born with Down syndrome give way to joy and resilience, according to researchers at Kansas State University and Texas Tech University. Briana Nelson Goff and Nicole Springer, both mothers of a child with Down syndrome, have based their findings on an online survey of parents.

"The goal of our study is to help parents and professionals understand that having a child with Down syndrome isn't the end of the world; it can be a very positive experience," says Dr Goff .

Initially, most parents feel deeply shocked. "The majority said it was very devastating, and went through periods of depression, grief, mourning and shock, and felt scared, angry, disappointed or helpless," Goff said. But when those feelings subsided, parents reported that raising a child with special needs was a joyful experience.

Around 20% of the parents reported negative experiences with their doctors, compared to 8% who said their experiences were positive. Medical professionals often mentioned abortion as the only option or parents felt pressured into making a decision to abort. "This was the biggest surprise to come from the results," Goff said. "I would expect this answer from parents who had their child 20 years ago, but not from parents who had their child within the past five years. Eventually the researchers will publish a book with statistical information and personal stories from parents. ~ Kansas State Uni press release, Aug 3

The Law and Neuroscience Project, a clearinghouse for a dialogue between law and brain scientists, has published A Judge's Guide to Neuroscience:  A Concise Introduction.  The useful 71- page manual contains articles by a number of leading neuroscientists which describe the latest consensus on a number of controversial questions which have been raised in BioEdge, along with the best current references. Here are some of its conclusions:

Can neuroscience identify lies? “There are no relevant published data that unambiguously answer whether fMRI-based neuroscience methods can detect lies at the individual-subject level.”

Does neuroscience give us new insights into criminal responsibility? “It is beyond the data generated from any currently published scanning protocol to make predictions about the rational capacity (or lack thereof) of a criminal defendant, or to make inferences as to that defendant’s intent at a specific moment in time before or during a specific criminal act.”

Can neuroscience identify psychopaths? “We are not currently at the point where we can use neuroscience to definitively identify, or diagnose, individuals with psychopathy.”

How is neuroscience likely to impact the law in the long run? “Currently the law operates with notions of personhood and agency that take seriously concepts of volition, control, choice, belief, desire, and responsibility. It is possible that neuroscientific advances will require revisions in some of these views, or less likely, a rejection of some of them as applicable to humans. If such notions become widely accepted, pressure will be put on the legal system to adapt to this new framework.”

A US pioneer of pre-implantation genetic diagnosis (PGD) has defended sex selection, saying that it is “not playing God”, but rather is “studying God’s work and learning from it.” Dr Jeffrey Steinberg runs fertility clinics in New York and Los Angeles. He told the Daily Record (Scotland) that many couples who come to his clinics do so because sex selection is banned in their home countries, including Scotland.

Dr Steinberg helps around 100 Britons select the sex of their baby each year, and that 79 percent of his patients are from outside the US. The procedure costs about £13,000  (US$21,000). Dr Steinberg’s Fertility Institutes are the world’s largest program for sex selection.

"We're not playing God. What we're doing is studying God's work, studying his creations and learning from it. We don't make boys or girls, the couples do that."

The process can be very financially draining, but Dr Steinberg is determined to help couples who come to the clinics. He says: "Sometimes the family call and say they're 80 per cent of the way there with the money but the wife is getting older and they fear they're running out of time. We say fine, just come. We do an occasional free case too. Some people are concerned about costs. Others come out and end up staying in the finest hotels in Beverly Hills." ~ Scottish Daily Record, July 29

A deadline approaches for the World Medical Association. It holds its annual general assembly in Vancouver from October 13 to 16. But the current address of its president-elect is “Tihar Jail, New Delhi”. Dr Ketan Desai, president of the Medical Council of India and a former president of the Indian Medical Association, was arrested on corruption charges in April. He was caught red-handed while accepting a bribe related to accrediting a medical college.  He is still described as “president-elect” on the WMA website.

Writing in the Indian Journal of Medical Ethics, Sanjay Nagral asks about the future of medical ethics in India. At the moment, the Medical Council has been disbanded by the government and replaced by six governors. Dr Nagral attributes the corruption to the rapid growth of the medical education industry.  

“Hundreds of private medical colleges (and ‘deemed universities’) … have been established, which need recognition and re-recognition from the Medical Council of India. Many of these lack the minimum standards and are willing to pay large sums for recognition. It must be noted that in many states these institutions are owned by political bigwigs for whom they are also centres of power. Thus, the Medical Council of India can spoil the party if it actually enforces standards. On the other hand, this is a veritable cash cow if someone wants to profit. A large amount of Desai's power and money came from doling out favours to these willing customers.”

He nearly despairs of reforming  the system and says that, ethically speaking, the Indian medical profession is on “a road to perdition”. Cleaning it up “is by no means a simple task and will need support from all those who want to see a genuine and honest self regulatory body emerge from the present crisis.” ~ Indian Journal of Medical Ethics, July

America’s pets receive better medical treatment than many Americans do, according to the American Society for the Prevention of Cruelty to Animals. While many Americans receive less and poorer health care than their pets do, there seems to be no limit on the amount they are willing to spend to save their animals.

The Society wrote that American pet owners spent US$12 billion last year paying veterinary bills – about double what they spent ten years earlier. Treatments for pets include state-of-the-art image-guided radiation treatment, stem cell transplants (one for treating arthritis costs $4,000) and sophisticated diagnostic procedures to pinpoint anything from cancer to lung disease.

However, intensive treatment of pets can have positive spin-offs for humans. For example, a new technique for repairing torn knee ligaments in dogs developed at the University of Wisconsin-Madison School of Veterinary Medicine was so successful that it is now being used on NFL players. ~ AP, Jul 20 

One of the initial concerns about in vitro fertilisation when it was first devised over 30 years ago was that it might cause genetic or other health problems. IVF is widely considered safe but several studies have suggested a slightly higher risk of birth defects and other types of illness among children born via IVF, particularly cancer.

Previous studies have not been successful in finding a link between cancer and IVF, but the largest study yet on the question has found one. A Swedish research team examined data from 26,692 children born via IVF between 1982 and 2005. Instead of the 38 cases expected among this number based on normal rates of cancer in the general population, there were 53 cases of cancer.

Previous studies have shown IVF babies’ slightly higher rate of birth defects such as heart problems and cleft palates. According to research published in ScienceDaily a month ago, IVF babies also show a higher rate of autism. It remains unclear how IVF might cause birth defects or health problems later in life. The authors of this new study note that it could have nothing to do with the actual IVF procedure, but rather with characteristics of women who undergo IVF or from birth complications. The study was published in the journal Pediatrics. ~ LA Times, Jul 19, ScienceDaily, Jun 30

 

Scientists at the Weizmann Institute of Science in Rehovot, Israel, are testing a “sniff detector” that picks up pressure changes in the nasal cavity of the wearer and converts them into electrical signals. The device can be connected to specially-designed software and used to move a computer cursor or drive a wheelchair.

The device was tested on three people with locked-in syndrome, a paralysing condition where a fully intact mind is “locked” inside a paralysed body. One of them, a 51-year-old woman left unable to move, blink or speak following a stroke, was able to communicate with her family for the first time. She spent 19 days learning how to produce a sniff on demand, practising 20 minutes each day, and was able to write her family a message. To this day, it is the only way she is able to communicate.

Another patient, a man who had been “locked in” for 18 years after a car accident, was able to write his own name after less than 20 minutes of using the device. The detector also enabled eleven other quadriplegics to drive a wheelchair and surf the internet.

The device was developed almost by accident by Noam Sobel, a neurobiologist at the Weizmann Institute. Dr Sobel told Discover Magazine: “we noticed that sniffs are a very good and fast trigger. It then simply dawned on us that instead of triggering odour, we could trigger anything: letters in a text writer or turns of a wheelchair. The rest just flowed or rather, rushed from there.”

Niels Birbaumer, at the University of Tubingen in Germany, told New Scientist that he was doubtful that the detector would work for fully locked-in patients. He said they would not have control of their muscular system to operate the device. Dr Sobel replied that the system was still in its developmental stages. ~ London Telegraph, Jul 27

 

Now for something COMPLETELY different – two advertisements for compulsory euthanasia. Not the garden-variety voluntary euthanasia that they have in the Netherlands and Belgium, or the sneaky compromise of doctor-assisted suicide, but “80 and Sayonara, nice knowing you”.

The experimental ads were on a network known for good production values and bad taste, Australia’s government-owned ABC. The Gruen Transfer, a program about advertising, set two agencies the challenge of designing persuasive TV ads for compulsory euthanasia. Kevin Macmillan, of The Works, won.

Both ads make the option seem very attractive. The Sydney chapter of a voluntary euthanasia group headed by Dr Philip Nitschke, Exit International, has invited Mr Macmillan to tell them all about it. ~ Mumbrella, Aug 4

The New York Times’s resident conservative, David Brooks, is clearly intrigued by a neuroscience explanation of morality. In a column this week he sketched the conclusions of a conference organised by The Edge about “the new science of morality”. The conference featured some of the leading figures in the movement, including Roy Baumeister, Jonathan Haidt, Sam Harris, and Marc D. Hauser.

The conference organiser, John Brockman, summarised the theme: “For the first time, we have the tools and the will to undertake the scientific study of human nature… In 1975, [biologist E.O.] Wilson… predicted that ethics would someday be taken out of the hands of philosophers and incorporated into the ‘new synthesis’ of evolutionary and biological thinking. He was right.”

Even David Brooks appeared taken aback by the revolutionary implications. For instance, Harvard’s Marc D. Hauser is particularly interested in an evolutionary explanation of evil. Up to now, he claims, science has shunned the study of evil. But he has an explanation: “evil evolved, and emerges in daily life, as an accident of our brain's engineering”.

Brooks pointed out that the speakers “barely mentioned the yearning for transcendence and the sacred, which plays such a major role in every human society”. This was made explicit by neuroscientist Sam Harris, who is better known as one of the “new atheists”. He says that developing scientific reasons for doing the right thing is an urgent task. “The failure of science to address questions of meaning, morality, and values has become the primary justification for religious faith.” ~ New York Times, July 22

 

The infertility industry in the United States has grown to a multi-billion dollar business whose main commodity is the eggs of college students, claims by The Center for Bioethics and Culture. Its documentary, Eggsploitation, which premiers on August 9, takes a very dim view of the IVF industry. It profiles three highly educated young women — Calla, Alexandra and Sindy — who all who suffered dangerous health complications as a result of the egg donation process.

Diane Allen, of Canada’s Infertility Network, says that “This film should be seen by any woman considering becoming—or using—an egg donor so that she can better understand the medical risks involved.”

In 2008 doctors at Massachusetts General Hospital were presented with a novel ethical dilemma. A 36-year-old woman had collapsed on an international flight with a massive heart attack and slipped into a coma. Her husband and relatives agreed that she should be taken off life support and allowed to die. However, the order was suddenly reversed. One of the relatives had been surfing the internet and discovered the possibility of retrieving and freezing her eggs so that the she could have a posthumous child with her husband’s sperm.

This was an unusual case, according to an article in a recent issue of the NEJM. While retrieval of sperm in such circumstances has become a familiar procedure, egg retrieval is almost unheard of. They decided not to proceed because neither the woman (nor her husband) had ever expressed any interest in having children, because she could not consent, because the procedure would not benefit her, and because the protracted egg retrieval procedure might actually kill her. Fortunately the husband agreed.

Evelyne Shuster, of the University of Pennsylvania, told the Boston Globe that she disliked the notion of creating a “souvenir baby”. “To reproduce is to experience the joy of giving birth, of caring and seeing your child develop to become an adult,” She said. “This is nonexistent when you have posthumous birth.” ~ NEJM, July 15; Boston Globe,  July 15

Do donor-conceived children have a right to know their origins? Vardit Ravitsky, of the University of Montreal, and Joanna E. Scheib, research director of The Sperm Bank of California in Berkeley, say that they do in a recent issue of Bioethics Forum.

It is not possible to get a completely accurate picture what donor-conceived children feel. Surveys of children who are looking for their sperm-donor fathers are affected by sample bias. On the other hand, most parents fail to tell their children if they are donor-conceived. This “creates an insurmountable limitation to the study sample in any research on the life experiences of donor offspring”.

However, nearly all surveys, imperfect as they are, indicate that most children would like more information about their biological father. Consequently, the authors have two suggestions for the regulation of donor gametes in the United States. First, the FDA should require records to be kept indefinitely by donor insemination programs, sperm banks, and fertility clinics. Second, a national register should be established to safeguard all information related to sperm and egg donation.

Ravitsky and Scheib know that there is little chance that the US will ban donor anonymity in the short term. But if ever the day comes, the information will exist in a central registry. ~ Bioethics Forum, July 20

A team of 30 doctors has announced that they have successfully performed the world’s first full-face transplant on a man whose face was severely damaged in a shooting accident five years ago.

The operation was completed in March in Barcelona, at the Vall d’Hebron University Hospital, after almost 24 hours of surgery. The 31-year-old Spanish man who underwent the surgery, known as Oscar, reportedly thanked his doctors at a press conference for giving him a second chance to enjoy “the little things” in life.

Before the surgery in March, Oscar was unable to breathe, speak or eat on his own, due to his shooting accident. After nine previous reconstructive operations, it became apparent that a complete facial transplant might be his only option.

After two years of waiting for a suitable donor, doctors extracted bone and tissue from a deceased man near Oscar’s own age, placed them in preservation liquid then transplanted lips, teeth, nose, jaw, cheekbones and tear ducts onto Oscar. His body rejected them twice, but doctors were able to treat him successfully. The risk of rejection remains, and he will need to take immunosuppressant drugs for the rest of his life - drugs which will increase his risk of developing cancer and other illnesses such as diabetes.

Oscar is now able to move his upper eyelids, jaw, eyebrows and parts of his cheeks. He has reportedly gained feeling in most of his face and hair has started to grow. The surgeon said the new face does not look like the donor’s. “We were afraid of that but it doesn't at all. The family believes that he looks quite like he did before.”

Oscar has not yet been released from hospital and allowed home. Doctors say that he is expected to recover up to 90% of normal movement and sensitivity over 12 to 18 months of rehabilitation. ~ Independent, Jul 27; BBC News 23 Apr

A man from Georgia’s west Cherokee County is seeking to end his life in a bid to grant organ transplants to those who need them.

Gary Phebus, 62, has an incurable neurological disease, amyotrophic lateral sclerosis, more commonly known as Lou Gehrig’s disease. He was diagnosed in 2008. “I didn't want to believe it," he said. "I didn't know the ramifications except that Lou Gehrig had died from it. I thought, 'How come me? How come I got it?' You think that happens to other people."

Phebus began researching organ donation online, and learned how long people wait for organ transplants. He came up with the idea to donate his organs – right now, a procedure that would end his life. "I have a death sentence. It is just a matter of time," he said. "I know people are waiting on organs. If I am going to die, why not - while my organs are still viable - go ahead and save five to 10 people." His wife, Patti, and his four children support his plan.

"I feel it is the right thing to do. There is a lack of organs. I don't feel like it is suicide," he said. "I am trying to give other people a chance." Phebus also wants to avoid years of medical bills and insurance claims. "I'm dead anyway," he said. "I want to live, but I don't see any way out."

However, Phebus may be thwarted by federal law. This stipulates that an donor must pass away from brain death or cardiac death first. More than 3,000 people in Georgia are waiting for an organ transplant, and over 108,000 in the national waiting list. ~ Cherokee Tribune, Jul 25

Hundreds of leftover IVF embryos from British couples have been given away to other people without their knowledge or explicit consent in a controversial Spanish “embryo adoption scheme”. As a result, hundreds of British couples may have unknown biological children in Europe or other parts of the world.

The Institut Marques clinic in Barcelona runs an “embryo adoption scheme” in which spare embryos are given to other women if the couple is unsure of what to do with them or if they do not reply to the clinic’s correspondence. Anonymity rules in Spain mean that the children will lose all links with their biological parents.

The situation has highlighted the risks of seeking fertility treatment abroad, where different laws apply. More and more British are going to foreign clinics where donor eggs or sperm are more readily available.

The “embryo adoption programme” at Barcelona’s Institut Marques clinic started in 2004, and the clinic says it is the first of its kind. A spokeswoman for the clinic that over one-third of British couples they treated are unsure of what to do with their embryos. This means that since 2004, 114 out of 317 couples treated did not decide what to do with their embryos, and they were adopted out. A further 26 couples agreed to adoption.

Each year the clinic writes to patients giving them the options to donate the embryos to other patients, donate them for research, keep them for future use or destroy them. However, the letters go mostly unanswered.

Prof Juan Alvarez, scientific director of Institut Marques and a professor at Harvard Medical School, had an explanation for this. “To sign this document creates a difficult situation for these couples and in some cases may trigger emotional conflicts. They value so much these embryos which, in fact, are brothers of their children already born, that they cannot make a final decision and that is why they leave it to the medical team of the centre to make that decision.”

Single women or couples can adopt the embryos. Each embryo is matched to a woman of the same race, and implanted in the womb and carried as normal. There is no official paperwork for adoption, because the “adoptive” mothers give birth to the children. ~ London Telegraph, Jul 22

“Egregious examples of deceptive marketing”. No, not door-to-door life insurance or encyclopaedias. This was how the US Government Accountability Office described firms selling genetic testing kits after an undercover operation.

Federal investigators bought 10 kits each from four of the companies, selected real donors to send in samples for testing, and made calls to the companies posing as fictitious customers seeking health advice. The four companies were 23andMe, Pathway Genomics, DeCode Genetics and Navigenics.

According to the GAO, the companies had sent donors different results for the same sample and told donors that they had a reduced risk of getting diseases that they already had. Also, the report said that two companies suggested that personalised supplements to cure diseases could be formulated using a customer’s DNA. One company representative told a consumer she had a high risk for breast cancer, despite the fact that the company did not actually test for the BRCA1 and BRCA2 breast cancer mutations. Another customer with a pacemaker implanted 13 years ago to treat an irregular heartbeat was told that he was at a decreased risk of developing that condition.

Kari Stefansson, executive chairman and president of research at Iceland-based DeCode Genetics, has denied the charges in the report, calling them “slanderous claims about sloppiness and misleading work.”

Stefansson said that DeCode provides consumers with accurate genetic risk assessments that are based on validated science. He also says that both genetic and environmental risk factors must be taken into account for certain diseases. “The fact that someone develops a heart attack,” he said, “does not mean he has a high genetic risk for heart attack.”

Congress and the Food and Drug Administration are currently investigating the genetic testing market for. Some officials have expressed concerns over the quality of the tests and the degree of variance between analyses by different companies. Also, many are concerned that people will make medical decisions based on the results without consulting the appropriate medical professionals. ~ New York Times, Jul 22

A national review of bioethics laws in France still has not reached a resolution. The current law dates back to 2004 and the government conducted an extensive review in 2009. The President, Nicolas Sarkozy, did not want the debate to be highjacked by “experts” so hundreds of meeting were held throughout the country – a kind of "Etats généraux de la bioéthique" after the Estates-General which inaugurated the French Revolution.

At the same time, a committee of parliamentary deputies conducted more than a hundred hearings with the experts -- lawyers, doctors, scientists, psychologists, and the religious leaders.

The upshot of this gigantic talk-fest was a 561 page report with 95 proposals for the National Assembly. The most significant of these are:

* the primacy of ethics over scientific and economic criteria

* The “interests of the unborn child” must be taken into account in making decisions about reproductive technology.

* bolstering research on genetic diseases, especially trisomy 21 (Down syndrome).

* better integration of disabled persons.

* preserving the ban on surrogate motherhood

* an extension of pre-implantation diagnosis to trisomy 21

* authorization of human embryonic stem cell research

It is likely that France will continue to be more restrictive than other countries in Europe. The raporteur for the report to the National Assembly, Jean Leonetti, told the French magazine Le Point earlier this year, “So what if surrogacy is permitted by our neighbours? If the law is determined by what everybody else does, what's the good of the law? How far are we prepared to manipulate bioethics to respond to our every whim? It's odd that we apply the precautionary principle to the environment and not to human beings.” ~ HT, Jean Matos

German scientists and doctors are still coming to grips with the grim story of how their colleagues collaborated with the Nazis. A recent issue of the journal Science sketches the link between German anatomists and the regime. Before Hitler came to power, about 20 civilians were executed each year in Germany and their bodies were made available to anatomists. Between 1933 and 1945, however, at least 16,000 civilians were executed – apart the death camps. By 1942, all the bodies of prisoners executed for high treason were being turned over to anatomists.

With the emergence of more historical data, Germany’s Anatomical Society plans to hold its first meeting on “Anatomy in the Third Reich” on September 29. “We hope that this will contribute to a global debate on ethical standards for the use of human cadavers in research and teaching,” Andreas Winkelmann, an anatomist at Charité Medical University in Berlin, told Science. Indeed, it is still an issue, as there have many allegations that the plastinated bodies in some travelling exhibitions come from executed prisoners.

Historians have uncovered abundant information about how callous the anatomists of the Third Reich became. In Vienna, for instance, a special streetcar ran between the place of execution and the medical school morgue. If the morgue was full, executions were delayed. At least 1,337 bodies were delivered in this way.

In another distressing example, the director of the Berlin Institute of Anatomy from 1935 to 1952, Hermann Sieve, dissected the bodies of 200 female prisoners to understand how their reproductive system was affected by the stress of learning the date of their execution. “The picture is one of a very gradual slippage in moral values among anatomists,” says Christoph Redies, a professor of anatomy at the Jena University Hospital. ~ Science, July 16

Even though many US states demand that doctors report colleagues whose performance is impaired by alcohol or drug use or by physical or mental illness, a survey in a recent issue of JAMA suggests that a third of them would not do it.

Catherine M. DesRoches, of Massachusetts General Hospital, in Boston, found that only 64% of American physicians agreed with the professional commitment to report physicians who are significantly impaired or otherwise incompetent to practice.  About 17% of the physicians surveyed had dealt with an impaired colleague, but on 67% of these had blown the whistle.

Overseas doctors and underrepresented minority physicians were significantly less likely than other physicians to report. The most frequently cited excuses included the belief that someone else was taking care of the problem; the belief that nothing would happen as a result of the report; fear of retribution; the belief that reporting was not their responsibility; or that the physician would be excessively punished.

"These… raise important questions about the ability of medicine to self-regulate,” say Dr DesRoches and her colleagues. “More than one-third of physicians do not completely support the fundamental belief that physicians should report colleagues who are impaired or incompetent in their medical practice. This finding is troubling, because peer monitoring and reporting are the prime mechanisms for identifying physicians whose knowledge, skills, or attitudes are compromised…

“Reliance on the current process results in patients being exposed to unacceptable levels of risk and impaired and incompetent physicians possibly not receiving the help they need." ~ JAMA, July 14

An 11-year-old UK schoolgirl, with the approval of her parents, has decided to have her leg amputated so that she can become a para-olympian. Danielle Bradshaw, of Newton, near Manchester, has no medical need of an amputation, but would like to have one so that she can follow her dream of being a world-class disabled athlete.

Danielle was born with congenital dislocation of both hips and the right knee. She has a healthy left leg but she does not want to spend the rest of her life “dragging the other one” behind her.  

Surgeons have told her that a number of operations and skin grafts could be performed on the right leg, which has been damaged since birth. However, they also told her that while she could keep the leg, she would not be able to use it. Her parents were astounded by her decision, but soon agreed. The operation has been scheduled for August.

This raises some thorny ethical issues. Can an 11-year old make an informed decision about a procedure of this gravity? Should parents allow their children to do so?

Her mother Debbie Quigley, 36, said: “Danielle suggested it to the doctors. They could have done reconstructive surgery but she said: ‘What’s the point of dragging around something that doesn’t work?’” Stepfather Darren Quigley, 49, said: “We couldn’t get our heads around it at first. But when we heard the options it makes sense.”

Danielle will be fitted with a prosthetic replacement leg once the wound heals. Her friends have begun raising funds to buy her a running blade and sports wheelchair. “I’m not scared, I’m excited. I can’t wait for it to be done so I can start running and training,” she said. “I just want to be a normal kid. I see people running and I want to know how that feels.” ~ Manchester Evening News, Jul 15

The fertility doctor for “Octomom” Nadya Suleman implanted too many embryos in yet another patient, resulting in the death of a fetus, the California state licensing board alleges. The Medical Board of California says that Dr Michael Kamrava acted negligently in implanting seven embryos in a 48-year-old woman, identified as “L.C.”

Four of these embryos became viable, but the woman lost one during pregnancy and gave birth to triplets, one of whom is profoundly developmentally delayed, the board said.

For a patient over 35, the US fertility industry recommends implanting only one or two embryos. However the medical board found that Kamrava "placed L.C. at great risk for high order gestation, which was confirmed by a quadruplet pregnancy that ended with catastrophic results".

The Beverly Hills doctor has been under investigation since Suleman gave birth to octuplets in January last year. He was expelled from the American Society for Reproductive Medicine last September.

Dr Kamrava faces another complaint – that he failed to refer another patient, H.L., for cancer screening, despite a history of cancer and her ovarian cysts. Allegedly he ruled out cancer on his own “rather than refer H.L. to a specialist for further evaluation”. In April 2009 she was diagnosed with cancer and had to have her ovaries, cervix, uterus and fallopian tubes removed. ~ AP, Jul 13

Stem cells derived from reprogramming adult cells may have limited usefulness as an alternative to embryonic stem cells, leading researchers said this week.

The study found that induced pluripotent stem cells, which have been the darling of stem cell scientists for the past couple of years, retain a “memory” of their original adult tissue. This may make it difficult to convert them to other cell types for medical treatment, say researchers from Harvard and Johns Hopkins. The findings were published online in Nature. Similar results from other Harvard researchers were published in Nature Biotechnology.

This could be a setback for regenerative medicine because iPS cells are a promising and ethical uncontroversial alternative for embryonic stem cells. However, researchers have already begun finding ways around the limits that the study has identified, so that the iPS cells could still be used for treating illnesses such as diabetes and Parkinson’s disease.

“It’s a challenge to be understood and overcome,” George Daley, a researcher at the Harvard Stem Cell Institute and Children’s Hospital in Boston and lead author of the Nature study, told Bloomberg Businessweek. “We already have strategies for overcoming this.” ~Bloomberg Businessweek, Jul 19

A Norwegian woman who engaged an Indian woman to be a surrogate mother of twins may not be able to bring them back home because they are not genetically hers.

Andras Bell (name changed), 31, commissioned a surrogacy at India’s Rotunda fertility clinic. She was suffering from premature ovarian failure, so she chose a Scandinavian sperm donor and an Indian egg donor. Twin boys were born in April.

Ms Bell did not anticipate a mandatory DNA test, which is demanded by many European consulates following a string of recent surrogacy controversies. This revealed that there was no biological link between her and the boys. Her only claim on them was that she had commissioned the surrogacy and signed a few forms at the IVF clinic stating that she would be their “legal mother”. The consulate refused to grant them citizenship.

“We provided all the relevant documents and two to three informed consent papers that she had signed,” said medical director of Rotunda, Dr Gautam Allahabadia. He added that the clinic had done nothing illegal or unethical. “Embryo adoption is a well-accepted choice, and probably the only option for women who are unable to conceive naturally,” he said. Dr Allahabadia helped to draft India’s proposed guidelines for surrogacy, which stipulate that fertility clinics should ensure that foreign clients liaise with their consulates to avoid visa problems. But these were framed only this year, months after Bell had commissioned the surrogacy.

Why didn’t Ms Bell just adopt a child rather than going through the surrogacy process? One IVF expert surmises that “One reason could be that she wanted to avoid the stringent adoption laws and believed that surrogacy was an easier path.” ~Times of India, Jul 21

October 6 is "Stem Cell Awareness Day". But where are the celebrations? Extensive googling failed to yield news of festivities. The California Institute for Regenerative Medicine, which was set up to promote research on human embryonic stem cells, has a section on its website dedicated to “Stem Cell Awareness Day 2010”.  But if you click on the link, you come to a half-finished site, without graphics or information, a scientific Marie Celeste bobbing on the internet.

The only feature that works is a video made for Stem Cell Awareness Day last year in which a high school teacher tells his students that stem cell research is more important than health care, that stem cell research is health care. “Hopefully, in the future, we’ll see everybody rejoicing about stem cell awareness because it has a fantastic potential to play a very important part in our lives,” said the CIRM’s director, Australian scientist Alan Trounson, in the 2009 video. Has the helium leaked out of the balloon?