Many of the most heated policy debates in bioethics hinge on the accuracy of the research -- in biology, medicine and social science. Will embryonic stem cells really cure patients? Do IVF children really thrive? Do some women really experience post-abortion trauma? So anything which affects the reliability of scientific knowledge also has a bearing on bioethics.
That’s what makes recent articles in the New York Times and in Nature so intriguing. They both assert that there is a crisis brewing over the reliability of science – not among “fundamentalists” and science sceptics, but among scientists themselves.
The New York Times highlights the belief of the editor of the journal Infection and Immunity, Ferric C. Fang, that a ten-fold increase in the number of retractions over the past ten years is a symptom of “a dysfunctional scientific climate”. And in an opinion piece in Nature, the co-director of the Consortium for Science, Policy and Outcomes at Arizona State University, Daniel Sarewitz, speaks darkly of “alarming cracks” in the scientific edifice which are eroding public trust.
“Contemporary science has brought about technological advances and an unprecedented understanding of the natural world. However, there are signs of dysfunction in the scientific community as well as threats from diverse antiscience and political forces. Incentives in the current system place scientists under tremendous stress, discourage cooperation, encourage poor scientific practices, and deter new talent from entering the field. It is time for a discussion of how the scientific enterprise can be reformed to become more effective and robust.”
He points to familiar problems: gender imbalance, the imperative of publish or perish, cheating and blatant fraud, selective reporting of results, the race to publish first, celebrity science and so on. “The present system,” he writes, “provides … potent incentives for behaviors that are detrimental to science and scientists.”
“You can’t afford to fail, to have your hypothesis disproven,” Dr. Fang told the Times. “It’s a small minority of scientists who engage in frank misconduct. It’s a much more insidious thing that you feel compelled to put the best face on everything.”
Dr Sarewitz also calls for change to eliminate bias. “Science's internal controls on bias [are] failing, and bias and error [are] trending in the same direction — towards the pervasive over-selection and over-reporting of false positive results.” Significantly for bioethics, he says that “the cracks in the edifice are showing up first in the biomedical realm, because research results are constantly put to the practical test of improving human health”.
As both men point out, what is at stake is the credibility of science itself in the public square.
A controversy has erupted in Massachusetts over the use of skin shock therapy for troubled teenagers. The Judge Rotenberg Educational Center in the suburb of Canton is a facility for people with severe emotional, behavioural and psychiatric problems, including autism. It is the only institution in the US which uses shock therapy – a 2-second application to the skin which feels like a pinch, or, its critics say, a bee sting. About half of its 250 students are treated this way.
This week, a graphic video from 2002 showing a restrained teenager screaming in pain while staff administered 31 shocks galvanised opponents into obtaining more than 200,000 signatures on a on-line petition to state legislators – although it included only 9,000 Massachusetts residents.
The JRC founder, Matthew L. Israel, a behavioural psychologist who trained with Harvard’s B.F. Skinner, was forced to step down last year over an incident in which staff gave two teenagers dozens of shocks after receiving orders from a prank phone call.
In the heat of claim and counter-claim, it is hard to know whether the therapy is mild and helpful or severe and abusive.
The JRC claims that its intensive behavioural therapies have successfully “treated the most difficult behaviours in the nation, often children and young adults who had been confined to psychiatric hospitals because their behaviour disorders could not be effectively treated”. It argues that the shocks are only given after a court and a child’s parents have approved. The alternative, it says, is drugging children and warehousing them in a mental hospital – which is a kind of torture.
Its critics say that electric shock therapy is the kind of torture would not be allowed in a prison. They have even managed to get the Manfred Nowak, the UN's Special Rapporteur on Torture, to ask the US government to investigate the institution. "Of course here they might say, but this is for a good purpose because it is for medical treatment,” Nowak told ABC in 2010. “But even for a good purpose -- because the same is to get from a terrorist information about a future attack, is a good purpose. To get from a criminal a confession is a good purpose.
A health writer in Time magazine, Maia Szalavitz, has written a book on the troubled-teen industry. She is a bitter critic of the JRC and says that it has never published a single peer-reviewed paper which demonstrates that the technique is successful. She dismisses glowing reports from parents as mere anecdotes.
The German government is drafting legislation to ban cosmetic surgery for teenagers except for medical reasons. At the moment, there is no minimum age. As a result, patients under 20 account for about 10% of all cosmetic procedures, according to the Association of German Plastic Surgeons. These include operations like breast enlargements, nose jobs and abdominal liposuction.
"For good reasons, the state protects young people from themselves as far as alcohol consumption and cigarette smoking go, and we think it's high time it did the same with regard to unnecessary and often risky cosmetic operations," a health adviser to the Christian Democratic Union, Jens Spahn, told Die Welt.
However, the bill is being opposed by a junior party in the governing coalition, the Free Democratic Party. “We have yet to be presented with specific reasons or reliable facts with regard to this," says Heinz Lanfermann. In his opinion, the boundaries between medical necessity and a purely cosmetic operation are often "extremely unclear."
“Teenagers who want to have plastic surgery usually have different motivations and goals than adults. They often have plastic surgery to improve physical characteristics they feel are awkward or flawed, that if left uncorrected, may affect them well into adulthood. Teens tend to have plastic surgery to fit in with peers, to look similar. Adults tend to have plastic surgery to standout from others.”
Gadfly: a person who annoys or criticizes others in order to provoke them into action (Oxford English Dictionary). There is no better word to describe Carl Elliott, a University of Minnesota bioethicist who is probably the profession’s most savage critic. In his column in the Chronicle of Higher Education this week, he returned to a favourite theme: the dangers of cosying up to the pharmaceutical industry. He complains that too many bioethicists are being funded by Big Pharma, which Dr Elliott tends to describe as a Mafia network.
The target of his wrath is the 2012 Pfizer Fellowship in Bioethics, which was awarded to Lynn Schuchter of the University of Pennsylvania. The US$100,000-over-two-years fellowships are for investigation of ethical issues -- including conflicts of interest. Dr Elliott helpfully points out that her project is sponsored by Ezekiel Emanuel, the new head of medical ethics at UPenn and a former adviser on health policy for the Obama Administration. He writes:
“If there is anything surprising about the upsurge in pharma-funded bioethics, it is that it has been accompanied by a dramatic rise in criminal behavior by the pharmaceutical industry: fraud, illegal marketing, ghostwriting, tax evasion, kickbacks, and bribery…
“Apparently, many bioethicists see nothing unseemly about sharing in profits generated by criminal activity. In fact, the bioethicists working with industry are often among the most prominent in the field. If anything, an association with the pharmaceutical industry has become a mark of professional success. What does this say about the future of bioethics?”
Dr Elliott’s on the pharmaceutical industry is clearly tendentious. But he is one of the few bioethicists to question the Olympian objectivity of the profession. Quis custodiet ipsos custodes? Who watches the watchmen?" It’s good to have a few guys like him around.
“Hey, I got a really good deal on embryos on Craigslist the other day.” Hopefully this story from Iowa is not a harbinger of things to come. Two couples, in Chicago and Florida, found their embryos through a Craigslist discussion group from an Des Moines couple who had 18 spare embryos. Deb and Kevin McCrea gave 9 to each couple for free, saving them thousands of dollars in IVF treatment.
The McCreas still want to keep in touch with their biological children and have asked the couples to agree to yearly reports and occasional visits – a novel kind of open adoption.
Mrs McCrea told the local TV station that she had considered giving the embryos to the IVF clinic, but she had some misgivings. “We went into give life and just because the doctor chose the two that we got doesn’t mean the other 18 shouldn’t have a chance at life also,” she reflected.
“One day I was just looking on Craigslist and I saw that they had a discussion forum, “she said, “and I thought why don`t I look on here and see if there’s anybody that’s in that process right now that might be interested in donating and having more of an open adoption of the embryos.” She was astonished at the response she received. ~ WHOtv.com, May 9
Thousands of drug capsules made from powdered baby flesh in China have been confiscated by South Korea customs agents. They were manufactured in northern China and smuggled in as stamina boosters. There were 35 attempts since last August, involving 17,450 capsules. Customs officials said that no one had been arrested, because the material, which contained bacteria and other harmful substances, was only intended for personal use.
BioEdge reported this story last year after a South Korean TV station investigated rumours that baby flesh was being used as an aphrodisiac. It sounded quite implausible and Chinese authorities dismissed the allegations. But it seems to have been true.
The gruesome news coincided with the publication of two academic books about similar practices in early modern Europe. Medicinal Cannibalism in Early Modern English Literature and Culture, by an Australian, Louise Noble, of the University of New England, and another by Richard Sugg of England’s University of Durham, Mummies, Cannibals and Vampires: The History of Corpse Medicine from the Renaissance to the Victorians, claim that for several hundred years, peaking in the 16th and 17th centuries, many Europeans, including royalty, priests and scientists, routinely ate “medicines” containing human bones, blood and fat as remedies for everything from headaches to epilepsy.
According to a recent article in The Smithsonian, this practice reflected the leading medical theories of the time – that like is cured with like, that blood contained the spirit and strength of a person, and so on. These beliefs died out in the 18th century, but as late as 1908, an attempt was made in Germany to drink the blood of an executed prisoner.
Paradoxically, Europeans were horrified by the cannibalism that they discovered in the New World. “The one thing that we know is that almost all non-Western cannibal practice is deeply social in the sense that the relationship between the eater and the one who is eaten matters,” says Beth A. Conklin, of Vanderbilt, an expert in cannibalism in the Americas. . “In the European process, this was largely erased and made irrelevant. Human beings were reduced to simple biological matter equivalent to any other kind of commodity medicine.”
In some ways, a kind of attenuated cannibalism persists today when organs are taken from executed prisoners in China or when body parts are trafficked in the US. “It’s that idea that once a body is dead you can do what you want with it,” says Dr Noble. ~ London Telegraph, May 7
The contentious issue of birth defects in babies conceived with IVF is on the boil again after a major study was published this week in the New England Journal of Medicine. Researchers at the University of Adelaide, in Australia, confirmed earlier surveys that found an elevated risk of defect among IVF babies. The odds for any birth defect in pregnancies involving assisted conception are 8.3%, compared to 5.8% for unassisted pregnancies.
However, they said that the risk seems due to “patient factors” like obesity or smoking, not to the procedure itself. “In vitro fertilization off the hook for causing birth defects” was the headline in Nature’s news blog.
However, this was only half the story. Some fertility treatments appear to be riskier.
ICSI (intracytoplasmic sperm injection), a technique which involves injecting a sperm into the egg, is one of these. The increased risk of birth defects is 57% over normal IVF, although the absolute size of the risk is relatively small. However, ICSI is very popular. In Europe, for some reason, it is used far more often than regular IVF.
Another area of concern is the tripling of risk in women using the fertility drug clomiphene citrate to stimulate ovulation outside of a closely supervised clinical setting. "While confined to a small group in our study, this is of particular concern as clomiphene citrate is now very widely available at low cost, and may easily be used contrary to manufacturers' very specific instructions to avoid use if pregnant, as it may cause foetal malformations." says the lead author of the study, Associate Professor Michael Davies.
Surprisingly, cryopreservation (freezing) of embryos is associated with a substantially reduced risk of birth defects, particularly for ICSI. "This may be due to developmentally compromised embryos failing to survive the freeze/thaw process," says Dr Davies.
Entering national politics is a bit like strip mining the family farm. As soon as you’ve sold your soul, the earthmovers get to work excavating your family’s life story. This week, for instance, two of Barack Obama’s old flames popped up in a tell-all biography to be released next month. And yesterday it emerged that Mitt Romney’s new twin grandchildren were born with the help of a surrogate mother.
His oldest son Tagg now has six children, three of whom have the same surrogate mother. Tagg and his wife Jen are the biological parents. He posted the news on Facebook:
“A special thanks to our gestational surrogate who made this possible for us. Life truly is a miracle, and we feel so blessed to be able to celebrate the arrival of these precious boys into our family. For those keeping score at home, these are grandchildren numbers 17 and 18 for my parents.”
According to Romney biographer Ronald B. Scott, three of Mitt Romney’s sons have resorted to IVF to create their families. The Republican presidential candidate is opposed to abortion, Plan B contraception and embryonic stem cell research, but has never clarified his views on IVF. ~ NY Times, May 4
(This article has been substantially revised.) Abortion is often described as a necessary component of women’s health. Abortion rights groups contend that unless it is legal and freely available, backyard abortionists will fill the gap in demand and maternal mortality rates will rise. Remarkably, though, for such a contentious issue, there is little data to back up this claim.
Chile is an important “natural experiment” for abortion policy. In 1989 abortion was made illegal with one of the more restrictive abortions laws in the world. Good statistics from the past 50 years make it possible to compare MMRs before the ban and after.
According to Elard Koch, of the University of Chile, and colleagues, the study “provides counterintuitive evidence showing that making abortion illegal is not necessarily equivalent to promoting unsafe abortion, especially in terms of maternal morbidity and mortality. Chile's abortion prohibition in 1989 did not cause an increase in the [maternal mortality rate] in this country. On the contrary, after abortion prohibition, the MMR decreased from 41.3 to 12.7 per 100,000 live births –a decrease of 69.2% in fourteen years.” The highest mortality rate was in 1961 (47.9 per 100,000 women of reproductive age), and the lowest in 2003 (0.72 per 100,000).
The article is sure to prove controversial in the never-ending abortion wars in developed countries. Support for "safe, legal and rare" abortion, in US President Bill Clinton's famous phrase, is based on two assumptions: first, that it is a fundamental right for women and, second, that it is absolutely necessary for women's reproductive health. Koch's analysis, the first evidence-based publication to analyse women's health after elective abortion became illegal in a country, suggests that the second assumption may be wrong.
"The lack of correlation between high maternal mortality and prohibition of abortion observed in this study also confirms circumstantial observations made in Europe. The lowest MMRs in Europe are in countries such as Ireland, Malta and Poland, in which elective abortion is illegal. Considering Chile has one of the lowest maternal mortality rates in the world, this analysis of Chilean maternal mortality statistics provides a model for other countries seeking a successful model for decreasing maternal mortality, and provides evidence that legalization of abortion is unnecessary to decrease maternal mortality."
The most important factor in reducing the MMR, Koch says, is more education for women. "Educating women enhances a woman’s ability to access existing health care resources and directly leads to a reduction in her risk of dying during pregnancy and childbirth." Other factors include: nutrition for pregnant women and their children in the primary care network and schools; universal access to improved maternal health facilities; changes in women’s reproductive behavior enabling them to control their own fertility; and clean water and good sanitation.
Another stunning finding from the study is that education is also associated with higher mortality rates. In his executive summary Koch calls this the “fertility paradox”: "when the total fertility decreases and produces a delayed motherhood it can also provoke a deleterious effect on maternal health via an increase of the obstetric risk associated with childbearing at advanced ages."
"This is certainly a paradox: education is the major modulator that has helped Chile to reach one of the safest motherhood [statistics] in the world, but [it] also contributes to decrease fertility, delaying motherhood and puts mothers on risk because of their older age."
The implications of the "fertility paradox" could be even more controversial than Koch's findings about abortion. The World Bank, for instance, says "there is no investment more effective for achieving development goals than educating girls". The UN's Millennium Goals use more education for women as an index of economic and social progress. But this may come with a high price tag.
Should termination of Down syndrome foetuses be regarded as a fundamental human right? This is an issue which the European Court of Human Rights (ECHR) is currently pondering. In the case of Krūzmane vs. Latvia, the mother of a girl with Down syndrome alleges that she was denied a screening test for the condition when she was pregnant in 2001. She claims that this test is a necessary element of “prenatal care” and that access is guaranteed by the fundamental right to respect for private and family life.
As often happens, the facts of the case are not completely straightforward. Ms Krūzmane, who was 40 at the time, consulted a doctor during her pregnancy. The doctor told her to consult a specialist for a test but failed to follow up on this advice. For this negligence the doctor was fined. However, a subsequent police investigation found that Ms Krūzmane had failed to keep her appointment with the specialist and had failed to inform her doctor that her eldest child also suffered from a congenital genetic disorder. After exhausting her legal options in Latvia, Ms Krūzmane has turned to the European Court of Human Rights.
Critics say that the Court is being asked to decide whether eugenics is a fundamental right. The court’s decision could impose a fundamental right to abortion because of a disability detected through screening on 47 member states.
Advocates for rights for children with Down syndrome have set up a website to protest against this move, Stop Eugenics Now. They argue:
“Recognising as a human right the elimination of children with Down syndrome before their birth amounts to stigmatising a human group selected on the basis of their genome. A favourable ruling would deny purely and simply the humanity of the persons with disabilities and setup in law the mechanism for their elimination.”
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| michael@bioedge.org
8:27:22 PM
Many of the most heated policy debates in bioethics hinge on the accuracy of the research -- in biology, medicine and social science. Will embryonic stem cells really cure patients? Do IVF children really thrive? Do some women really experience post-abortion trauma? So anything which affects the reliability of scientific knowledge also has a bearing on bioethics.
The German government is drafting legislation to ban cosmetic surgery for teenagers except for medical reasons. At the moment, there is no minimum age. As a result, patients under 20 account for about 10% of all cosmetic procedures, according to the Association of German Plastic Surgeons. These include operations like breast enlargements, nose jobs and abdominal liposuction.
Gadfly: a person who annoys or criticizes others in order to provoke them into action (Oxford English Dictionary). There is no better word to describe Carl Elliott, a University of Minnesota bioethicist who is probably the profession’s most savage critic. In his column in the 
Should termination of Down syndrome foetuses be regarded as a fundamental human right? This is an issue which the European Court of Human Rights (ECHR) is currently pondering. In the case of