"HMOs are denying access to healthcare and hastening people's deaths already," said Paul Longmore, a history professor at San Francisco State who is severely affected by polio. "Our concern is not just how this will affect us. Given the way the US healthcare system is getting increasingly unjust and even savage, I don't think this system could be trusted to implement such a system equitably, or confine it to people who are immediately terminally ill."
Longmore worries about the effect of depression and dependence. "Oncologists and others who do end-of-life care have told me there's a lot of treatable depression in terminally ill people, but it often goes undiagnosed and untreated," he says. "Death with dignity means you get all the services you need and you don't have to worry about burdening your family or other people. "
Not all activists feel this way. Another polio victim, Alan Toy, an actor, says that opposition to assisted suicide comes from fear. "I'm tired of living my life from that perspective," he says. He argues that even the disabled should have an opportunity to choose. "I don't believe people will be looking for any tiny loopholes in the law so they can start exterminating us against our will. I don't know how they make the leap to thinking this is going to be the death of us." ~ Los Angeles Times, Aug 6
Something to anger everybody. That is the package delivered by a parliamentary committee which has been reviewing an overhaul of Britain's fertility legislation. The government will probably respond within two months and introduce legislation by November.
One of its contentious comments called for recognition of the role of fathers, even for children conceived in the topsy-turvey world of artificial reproductive technology. The draft bill removed the need for IVF clinics to take into account a child's need for a father. There is nothing wrong with lesbian couples, the committee stressed, but two-parent families are still important.
Even more sparks flew over donor anonymity. Children born with the help of donated sperm and eggs should have this recorded on their birth certificates. The state should not be party to a lie, the committee argued. Since 2005, British donor-conceived children have the right to learn the identity of their biological mother or father once they turn 18. Since most parents withhold this information, placing it on a birth certificate is going to lead to more requests.
This view was supported by 24-year-old Tom Ellis, a PhD candidate in mathematics, who only discovered at the age of 21 that his biological father had been a sperm donor. "I feel so betrayed because I don't know who my father is," was the headline over his melancholy tale in the Daily Mail.
"Bizarre", responded outspoken MP Evan Harris. "There is no proper evidence that children or adults suffer from not knowing who their 'real fathers' are, whether from IVF or from infidelity," he said. He was backed up by the chief ethicist for the British Medical Association, Dr Vivienne Nathanson. The committee's view of parenthood is decades out of date, she wrote. Parents ought to be honest with their children, but they should be coaxed into doing so, not forced. Placing "donor conceived" on birth certificates is "a highly genetic-determinist view of life".
Lest conservatives sense a spring thaw in the moral climate, the committee also called for a "more permissive regulatory regime" -- in a country which already has one of the most permissive in the world. Criteria for "saviour siblings" should be expanded to include serious but non-fatal conditions and laws restricting the use of human-animal hybrid embryos should be relaxed to ensure that there would be no shortage of embryos for British researchers to tinker with.
Finally, to the rejoicing of the IVF industry, the committee took a dim view of proposals to merge the UK's fertility regulator, the Human Fertilisation and Embryology Authority, with the Human Tissue Authority. This might undermine public trust in the regulation of fertility services -- and this would be too high a price to pay, said committee chairman Phil Willis. ~ e-Politix, Aug 1; BBC Aug 1; Guardian, Aug 1; Daily Mail, Aug 2;
MISSOURI'S STEM CELL VICTORS' HOPES FADE
Last November, supporters of embryonic stem cell research in Missouri thought that their state would become a leader in the controversial field. Voters had just amended the state constitution to allow therapeutic cloning and the well-endowed Stowers Institute for Medical Research was poised to launch a major research program. But nine months down the track, the air has gone out of the balloons. The Stowers Institute has cancelled plans for a major expansion in Kansas City and has moved its endowment to Delaware. "It's like Amendment 2 never passed," says Bill Duncan, a local biotech investor.
The problem is that opponents of cloning did not beat their swords into plowshares after November's setback. Since the amendment only guaranteed the legality of therapeutic cloning, legislators made their point by stripping some prominent life science projects of funding. Stowers has pulled up stakes because of the controversy, even though it had spent nearly US$30 million in advertising to pass the amendment.
One of America's leading stem cell scientists, Kevin Eggan, of Harvard University, once considered moving his lab to Missouri. Now he has scratched the idea. "Anyone who does the kind of work I do would never consider going there now." ~ Los Angeles Times, Aug 1; Washington Times, Jul 24
SERENDIPITY COMES TOO LATE FOR HWANG
Once feted as the glory of Korean science, now disgraced as a fraud, Hwang Woo-suk has suffered another blow to his reputation. According to a recent paper in the journal Cell Stem Cell, he was too dim to see how good his work really was. In a review of his experiments in the journal Cell Stem Cell, scientists say that he definitely had not created a stem cell line from a cloned human embryo. Rather he had produced it from an unfertilised egg. Parthenogenesis, not cloning, was the source of his stem cells.
In an belated tip of the hat, scientists praised his work. "I think this is every bit as exciting as the somatic cell nuclear transfer they were claiming," said Kent Vrana of Pennsylvania State University. "Parthenotes by their very nature are non-viable embryos, so you're not destroying embryos, which has some ethical advantages."
"It's an unfortunate irony that they didn't know what they had," says George Daley, a Harvard biologist who led the latest analysis. "It would have been a very important discovery." ~ Nature, Aug 2
TV PROMOTES DEMAND FOR COSMETIC SURGERY
TV may make you obese and violent, but also beautiful, or so it seems to many Americans. The first glimpse into how reality TV affects demand for cosmetic surgery, in the journal Plastic and Reconstructive Surgery, reports that four out of five patients in a small study had been "directly influenced" by shows like "Extreme Makeover", "I Want a Famous Face", and "Miami Slice". More than half of patients watched one such program regularly. Only 12% said that they had never seen one.
"It is unfortunate that patients are turning toward the entertainment industry for educational information -- we had hoped for different results," said a co-author of the study, Dr John Persing, of Yale University. "These shows may create unrealistic, unhealthy expectations about what plastic surgery can do for you. Although it's called reality TV, it may not be reality." ~ Newsweek, Jul 24; Cosmetic Surgery Answers, Jul 25
DILEMMA FOR WOULD-BE RESCUERS OF KIDNEY DISEASE PATIENTS
At 11.03pm on August 7, there were 72,796 Americans waiting for a kidney transplant, plus another 24,218 waiting for other organs. "Help save a life" is the powerful appeal used by the United Network for Organ Donation, the body which coordinates organ donation in the US. This emotional slogan supports the so-called "rule of rescue" which urges people to save an endangered life at any cost.
But is this realistic, asks Mary Ann Baily, a health economist at The Hastings Center, an American bioethics thinktank. She says that advocates for increasing the supply of kidneys have managed to depict kidney donation as a matter of life of death, when often only an improvement in the quality of life is at stake. "In my opinion, calling a transplanted kidney 'life-saving' is a stretch," she writes.
People with other chronic diseases and severe disabilities could have a longer life expectancy and dramatically better quality of life if their plight were publicised as vigorously as people with kidney disease. "Some kinds of human suffering receive a lot more attention than others, and the result is a disturbing pattern of inequities," she writes. ~ Bioethics Forum, Jul 27
ETHICS COMMITTEES FACE CRISIS
Too much red tape. Over-protective. Unsafe. Too slow. Too quick. There is no end to the criticism that ethics committees or Institutional Review Boards (IRBs) face, 40 years after they became mandatory for research on human subjects. Many researchers complain that the system has become so cumbersome and slow that it could actually endanger patients. Frustrated researchers might decide to run around hurdles instead of over them.
The first problem, according to a recent feature in Nature, is coordinating networks of local IRBs. As far back as 1998, a US government report said that multicentre trials were creating a crisis. In one instance, negotiations between 65 IRBs delayed a study by a whole year. One solution is outsourcing ethical assessment to a central authority. But this is often resisted by local IRBs who feel that a centralised system ignores local context. Furthermore, centralisation could end up adding yet another layer of bureaucracy. Liability is another thorny issue. Even if a centralised board took responsibility, the local IRB could still be sued.
Another solution is commercial IRBs, which assume legal liability and are far quicker (though more expensive). The two largest, Chesapeake Research Review and Western IRB, have even received official accreditation. But many researchers are wary of them, too, because of potential conflicts of interest. For-profit IRBs might lower their standards to please their clients.
Reform of the unwieldy system in coming, says Nature, but not soon. The chair of the US Department of Bioethics at the National Institutes of Health, Ezekiel Emanuel, says that sooner or later a scandal will trigger call for reform: "I think we're just one accident away, but it will still take the accident." ~ Nature, Aug 2
STEM CELLS GO MEDIA SAVVY
A long political and ethical battle for public support faces stem cell scientists around the world, especially in the US, as they continue to press for therapeutic cloning. One resolution from July's meeting of the International Society of Stem Cell Research in Australia was therefore to establish an advisory council of leading international business leaders and policy-makers. Harvard researcher George Daley, the ISSCR's incoming president also plans to organise a ISSCR Global Forum to examine the scientific, political and ethical challenges facing stem cell research.
Another avenue for influencing public debate is media engagement. Two highly professional and informative websites have recently been launched which will help support the ISCCR's viewpoint in the media.
The first of these is Nature Reports: Stem Cells, which "brings the science and news behind stem cell research to your desktop". The well-staffed site has plans "to create an even richer, more interactive, online resource for the stem cell community, incorporating podcasts, databases and resources. Our goal is create more opportunities for the community not only to listen, but to be heard." It includes an interesting blog, "The Niche".
The second is called simply "The Stem Cell", a blog financed by Stanford's Program on Stem Cells in Society, and run by the program's director, Christopher Scott, an academic who specialises in the social, economic, political and ethical dimensions of regenerative medicine. It is cooperating with Nature's blog, as well.
A third specialist stem cell blog is independent: the California Stem Cell Report. This offers "news, information and commentary on public policy and business issues involving California's new stem cell agency, the California Institute for Regenerative Medicine". It is edited by David Jensen, an experienced journalist. Of the three, this is the most informative, but its scope is narrower-- the colourful brawls and in-fighting over how the Golden State will spend US$3 billion of its taxpayers' money on stem cell research.
IN BRIEF: California; research fraud; sperm donor
CALIFORNIA: After seven months of searching, even a salary of US$400,000 has failed to attract a suitable applicant for the CEO of the California Institute for Regenerative Medicine. Robert Klein, the CIRM chairman, says that he is "committed to getting absolutely the right person". ~ Wired, Aug 3
MISSOURI: Science has retracted an article on embryonic stem cells because it included photos which had been doctored by a former researcher at the University of Missouri-Columbia. It appears that an Indian post-doc, Kaushik Deb, had falsified images. Deb has returned to India and vanished. ~ AP, July 27
SPERM DONOR: An Irish man who donated his sperm to a lesbian couple has won a legal battle to keep his son in Ireland. This has kept the boy's two mothers from relocating to Australia. The unidentified man now plans to press for joint custody. ~ Scotsman, Jul 20
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Assisted suicide has failed in the California legislature five time in the past 12 years. Why? Surprisingly, it's not the religious right, but disability activists who are responsible, says the Los Angeles Times. Many fear that if assisted suicide were legalised an increasingly stingy healthcare system would withhold care until disabled people decided to end it all.