The meeting focused on how to get more British parents to declare they have adopted a surrogate child (which is done through applying for a parental order). Many parents believe any such application will be rejected, for they have paid a woman more than out of pocket expenses to carry the child. This payment is technically illegal in Britain. Parents are also concerned that the regulations in foreign surrogacy clinics do not meet the standards required for the granting of a British PO. The upshot is that about 1,000 children of surrogate mothers enter Britain each year and many of them lack a clear parental status.
The conference has backed the establishment of a International Convention on Surrogacy, along the lines under consideration by the Hague Conference on Private International Law. Bilateral agreements between governments may be quicker way to address the issue. It was also suggested that the UK Government should make it easier to apply for Parenting Orders, by lowering the cost and quickening the process.
What is it about stem cells that attracts scientific misconduct? Even a decade after the exposure of one of the most egregious charlatans of the 20th century, Korean scientist Hwang Woo-suk, there is a long train of discoveries which turn out to be based on shoddy or even fraudulent work.
The latest scandal has come to light in Germany. Cardiologist Bodo-Eckehard Strauer, who retired in 2009, has claimed that stem cells derived from bone-marrow cells will repair damage in diseased hearts. Now a investigators at the University of Düsseldorf says that there is evidence of misconduct in his clinical trials. It has handed a report to police prosecutors.
Strauer’s work has been under attack in Germany for years, with his critics complaining that he had transformed the results of a single case into an amazing “global innovation”.
Last year, a commentary on an analysis of Strauer’s work in the International Journal of Cardiology was scathing in its assessment of his work:
“The analysis by Francis et al. suggests that there have been numerous publications of the same sets of data from Strauer’s group. Moreover what initially appear to be duplicate publications provide contradictory descriptions of experimental designs and of results. At the same time there are implausible agreements between data in populations of different sizes as well as statistical and arithmetic impossibilities in other datasets. I can see no logical option but to suspend belief in any of the data reported in these publications until an appropriate investigation has been performed.”
According to 2012 figures, IVF babies now make up 1.5% of all children born in the United States. According to a report from the Society for Assisted Reproductive Technology (SART), its 379 member clinics performed 165,172 cycles, or procedures involving IVF, in 2012. These resulted in the birth of 61,740 babies, an increase of more than 2000 infants from 2011. With an estimated 3.9 million births in the US in 2012, IVF babies now constitute about 1 in every 67 births.
This is a new high for the US, although rates in other countries are far higher. According to the European Society for Human Reproduction (ESHRE), in Belgium, Denmark, Finland, Iceland, Norway, Slovenia and Sweden at least 3.0% of all babies born were conceived by ART. An estimated 5 million children have been born through IVF around the world.
An independent comment by investigative journalist Miriam Zoll.
The most comprehensive study to date evaluating the effectiveness of egg freezing revealed that, despite a new flash freezing technique, high failure rates continue to be associated with egg freezing procedures across all age groups.
The May 2013 data meta-analysis study published in Fertility and Sterility found that using a technique known as ‘vitrification’ did reveal some improvements for women younger than 30 but that there were certainly no guarantees. Tracking outcomes of 2265 thaws in 1805 patients the study found:
For women aged 30, the failure rate of an embryo deriving from slow freeze method of egg freezing to transfer was 91% (8.9% success); with vitrification (flash freezing) the failure rate was 77% (13.2% success).
Women aged 40: 96% failure rate with the slow freeze method (4.3% chance of success) and a 91% failure rate with V (8.6% success)
There were some live births recorded with the slow freeze method at age 42 and some with vitrification at age 44, but these were very small percentages.
Miscarriage rates in women between the ages of 30 and 40 who used the slow freeze technique were 35-41 percent. The use of vitrification in this age group reduced miscarriage to 19 – 22 percent.
Researchers concluded: “Our analysis revealed age 36 years as the cut point to provide the best discrimination between successes vs. failures, hence optimal results may be expected in patients who are younger than this age threshold (younger than age 36 is best).”
In October 2012, the American Society for Reproductive Medicine (ASRM)––the lobby and voluntary regulatory arm of roughly 500 infertility clinics in the U.S.––lifted the “experimental” label from this still young science.
Its Practice Committee said it was not yet ready to endorse widespread use of egg freezing for elective treatments and, while randomized controlled studies were rare, the committee said it did find ‘sufficient’ evidence to “demonstrate acceptable success rates in young, highly selected populations.”
Citing a lack of data on safety, efficacy, cost-effectiveness, and potential emotional risks, their report states, “Marketing this technology for the purpose of deferring childbearing may give women false hope and encourage women to delay childbearing. Patients who wish to pursue this technology should be carefully counseled.”
As would be expected, once their decision became public, their warnings about women’s age and infant health was obscured and eventually obliterated by the dust kicked up by a stampede of panicked but hopeful 30 and 40-something women running to the nearest fertility clinic to have their eggs harvested for future use––for anywhere between US$10,000 and $15,000 or more.
One must wonder why the ASRM felt so compelled to provide a stamp of approval for a procedure still lacking in reliable safety and efficacy data. As legal scholars Debora Spar and Naomi Cahn have written in their books, The Baby Business and Test Tube Babies, respectively, in the context of an unregulated industry in the United States, it is virtually impossible to separate the medical and market forces at play when new techniques and procedures are advertised to potential clients.
The blurred boundaries between fertility clinics wanting to provide patients with safe, evidence-based procedures while also needing to generate business to meet their bottom lines puts that much more pressure on consumers to know what they are signing up for.
All of contemporary bioethics springs from the Nuremberg Doctors Trial in 1947. Seven Nazi doctors and officials were hanged and nine received severe prison sentences for performing experiments on an estimated 25,000 prisoners in concentration camps without their consent. Only about 1,200 died but many were maimed and psychologically scarred.
So did the US do to the hundreds of Japanese medical personnel who experimented on Chinese civilians and prisoners of war of many nationalities, including Chinese, Koreans, Russians, Australians, and Americans? They killed an estimated 3,000 people in the infamous Unit 731 in Harbin, in northeastern China before and during World War II – plus tens of thousands of civilians when they field-tested germ warfare. Many of the doctors were academics from Japan's leading medical schools.
Well, almost nothing. Twelve doctors were tried and found guilty by the Soviets in the Khabarovsk War Crime Trials in 1949, but they were all repatriated in 1956. American authorities dismissed the trials as Soviet propaganda. Many of the doctors in Unit 731 went on to successful careers in Japan after the War. The commander of the unit, Shirō Ishii, lived in relative obscurity but his successor late in the war, Kitano Masaji, became head of one of Japan’s leading pharmaceutical companies.
How did the Japanese doctors escape justice?
A fascinating answer appears in the Cambridge Quarterly of Healthcare Ethics. The broad outline of the story has been well documented, even if it is not widely known. To cut a long story short, the Americans struck a deal with the doctors. They traded immunity from prosecution for access to scientific information from the ghastly Japanese experiments – many of which are too grim to detail here. (If you have the stomach for it, a remorseful doctor describes, at the age of 90, some of his vivisection experiments in an article in the Japan Times.)
A report from US scientists who interviewed the staff of Unit 731 and the surviving records concluded that “Such information could not be obtained in our own laboratories because of scruples [sic] attached to human experimentation. . . . It is hoped that the individuals who voluntarily contributed this information will be spared embarrassment [ie, not tried for crimes against humanity] because of it and that every effort will be taken to prevent this information from falling into other hands [ie, the Soviets].”
The authors of the article observe that: “Although it is only conjecture, it is tempting to read into these statements a further conclusion that the Americans, contrasting their slow progress at Camp Detrick [a US biological warfare research facility] with the apparently vast accomplishments of Unit 731, were appreciative of what the Japanese lack of ‘scruples’ had achieved.”
The remarkable feature of the investigation of the crimes of Japanese military doctors was that it was American scientists who foiled attempts to prosecute them. They won over the US Army lawyers to their point of view. An Army task force concluded that “ “The value to the U.S. of Japanese [biological warfare] data is of such importance to national security as to far outweigh the value accruing from ‘war crimes’ prosecution.””
From a distance of 70 years, what explains this moral blindness? The article suggests two reasons. First, the Japanese were so ruthless that they left no evidence, no maimed and scarred survivors, no one to touch the hearts of newspaper readers, no heart-wrenching stories of torment. They were all slaughtered. Second, “wartime exigency”.
“Wartime exigency does more than simply prioritize national security over human rights. It urges toughness and decisiveness in decision-making, such that a moral blindness that would be seen as a deficiency in other times is instead seen as a virtue and a necessity.”
The authors conclude that the American authorities were clearly “accomplices after the fact” to these appalling crimes.
After 11 years of participation in euthanasia, an official complaint has finally been lodged with the Belgian Medical Association against the leading practitioner in Belgium, Dr Wim Distelmans. In a three-page letter Tom Mortier and Dr Georges Casteur allege that Distelmans did not have the expertise to evaluate whether Mortier’s mother, Godelieve De Troyer, was ready for voluntary euthanasia.
They point out that Distelmans is not a psychiatrist or even the woman’s family doctor, but a cancer specialist. However, De Troyer was physically healthy and not suffering from physical pain. Before contacting Dr Distelmans she spoke with psychiatrists who thought that she could recover from her evident emotional distress. She was also taking medication which can cause suicidal ideation, but Dr Distelmans did not seem to take that into account.
Feature stories in the media describe tender deathbed euthanasia scenes of patients surrounded by grieving but serene relatives. But Mortier says that De Troyer did not want her family to be notified because she was suffering from clinical depression. He feels devastated because he was unable to bid her farewell when she died in 2012.
However, Distelmans’s supporters point out that the law is crystal clear about informing relatives of a euthanasia request. The doctors are supposed to inquire, but if the patient refuses, it would be a violation of doctor-patient confidentiality to contact the relatives.
Mortier and Casteur have also questioned how euthanasia is currently regulated in Belgium. De Troyer made a donation of 2,500 Euros to Distelmans’s right-to-die association, LEIF, two months before she died. Distelmans administers euthanasia to many patients, but he is also the head of the commission which investigates failure to observe the euthanasia law. They suggest that this is a clear conflict of interest and that the composition of the commission should change.
Distelmans was reluctant to comment on the complaint to the media, but he did point out that it was the first complaint which had ever been made against him in 11 years of doing euthanasia.
Nearly 80% of RCGP members who submitted individual responses to the consultation expressed the opinion that the College should remain opposed to a change in the law to permit assisted dying. In addition, of the 28 RCGP bodies that took part in the consultation, 20 reported a majority view against a change in the law.
Although a minority of respondents put forward cases to shift the College’s collective position to ‘neutral’ or ‘in favour’ of a change in law on assisted dying, most respondents were against a change in the law. These are a few of their reasons:
change would damage the doctor-patient relationship
it puts the most vulnerable groups in society at risk
It is impossible to eliminate the possibility of coercion.
A change would shift the focus away from investing in palliative care and treatments for terminal illnesses
New laws would instigate a ‘slippery slope’ whereby it would only be a matter of time before assisted dying was extended to those who could not consent due to reasons of incapacity and the severely disabled.
Some doctors thought that the possibility of a wrong decision being made was too high to take the risk. The GP-patient relationship, with GPs often attending patients in the final days and hours of their lives, means that GPs would be one of the professional groups most affected by any change in the law on assisted dying.
Dr Maureen Baker, Chair of the RCGP, said: "This was one of the most comprehensive consultations the College has ever undertaken and the quality of the responses on this extremely important issue has been very high. GPs will continue, as they have always done, to provide excellent care to patients in the final days and hours of their lives."
Peruvian state prosecutors have cleared former president Alberto Fujimori of crimes against humanity relating to his government’s sterilization campaign in the 1990s. Fujimori had been accused of authorizing the forced sterilization of thousands of indigenous Peruvian women. Prosecutor Marco Guzman concluded that there was no systemic forced sterilization, though coercion may have been used in isolated cases: “The women would come to the clinic, agree to the procedure, and undergo sterilization. That was the regular, the normal process,” he said.
2,074 women have given statements to local and international rights groups saying that they had their tubes tied without their knowledge or consent. At least 18 women died as a result of the surgery, the groups claim.
Peruvian women’s rights group Demus have appealed the ruling. “We reject the decision of the public prosecutor that the public policy (under Fujimori) was not systematic and therefore not a crime against humanity”, said Demus lawyer Rossy Salazar. “This was not a common crime but a crime against humanity because so many women were involved”.
In September 1995 the Peruvian parliament passed a bill that revised the “General Law of Population” in order to allow for sterilization. In the following three years over 210,000 women were sterilized, the vast majority in poor indigenous communities.
A study in the journal Fertility and Sterility has found that children born from assisted reproduction are as healthy and well-educated as their naturally conceived peers. Lead researcher Jane Halliday, of the Murdoch Children’s Research Institute in Melbourne, Australia, wrote about her work in The Conversation. She said that: “most IVF offspring have grown into healthy young adults with a quality of life and educational achievement comparable to those of non-IVF conceived peers.”
Questions hover over the long-term safety of IVF because of the great differences in the early environment. Hormonal stimulation, fertilisation outside the body and living in a Petri dish for a couple days are not the way that most people begin life.
IVF children clearly have an increased risk of preterm birth and lower birth weight compared to other children. They are also more susceptible to some birth defects. However, little research has been done on the effect of IVF upon the health of older children. Dr Halliday and her colleagues studied the health of young adults aged 18 to 28, and reached generally positive conclusions. The only caveat was that
“We did find that IVF children had a slightly higher chance of asthma and other respiratory allergies, such as hay fever, which are common conditions in the whole community. But the difference was small with 30% for IVF children and 23% for others.”
There were some limitations to the research. First of all, the good news was self-reported by mothers and children and was not based upon medical examinations. In fact, the information was gathered over the phone. There may have been a degree of selection bias, as a high percentage of couples fail to tell their children that they were conceived through IVF. Mothers were excluded if their child had died (which is the ultimate confirmation of bad health). And only singletons were studied, but much of the ill-health for IVF babies is linked to multiple births.
What the study may show is that if women have singleton IVF babies, it is unlikely that they will be less healthy as young adults. But the question of whether they have a lower life expectancy due to health problems in middle age remains unanswered.
Concern is mounting about widespread surveillance of patients and staff in US hospitals. In an article published in this New York Times, US bioethicist Tim Lahey wrote of the “proliferation” of surveillance, ranging from the monitoring of fragile elderly patients to the recording of staff washrooms to ensure patients are washing their hands.
Lahey recounted various controversial cases of surveillance in hospitals, including the installation of secret security cameras in the nurse locker rooms of a Los Angeles hospital in 2004. In a hospital where Lahey chairs the bioethics committee there was spirited debate over whether to install a video camera in the room of an infant suspected of being routinely abused by his mother.
In the US video surveillance is legal except where patients have a valid expectation of privacy, such as in bathrooms and locker rooms. Where there is reason for surveillance within patient’s rooms, hospital ethics committees need to balance their commitment to patient privacy against the need to ensure the safety of the vulnerable.
“Hidden cameras should be a last resort”, Lahey argues. “Hospitals should notify patients that covert video monitoring may be used in unusual circumstances, and only with the oversight of a hospital ethics committee.”