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  8:56:00 PM

OPINION: Egg freezing is a health risk

Responsible doctors should not be recommending egg freezing to perfectly healthy young women who have no medically indicated need. The dearth of evidence-based safety and efficacy data, combined with low numbers of live births resulting from egg freezing, do not justify broadening the application of the procedure to the general public at this time.

There is no long-term data tracking the health risks of women who inject hormones and undergo egg retrieval, and no one knows how much of the chemicals used in the freezing process are absorbed by eggs, and whether they are toxic to cell development. In addition, even with the new flash freezing process, the most comprehensive data available reveals a 77 percent failure rate of frozen eggs resulting in a live birth in women aged 30, and a 91 percent failure rate in women aged 40.

According to the Society for Assisted Reproductive Technology, for a woman age 38, the chance of one frozen egg leading to a live birth is only 2 to 12 percent. This is an important and significant finding given that the average age of nonmedical egg freezing customers in the US is 37.4. Worldwide in 2011, fewer than 10 babies were estimated to have been born from eggs frozen for women aged 38 and older.

The egg freezing guidelines issued by the American Society for Reproductive Medicine clearly state that egg freezing should only be used when there is medical need, such as women undergoing cancer treatments. Two years ago its practice committee reviewed 981 articles about egg freezing and found that only 112 had any relevant safety and efficacy data. Despite this shortage of quality research, it decided to remove the “experimental” label but stressed that “marketing this technology for the purpose of deferring childbearing may give women false hope.”

Samantha Pfeifer, committee chair at the time, was quoted as saying: “While a careful review of the literature indicates egg freezing is a valid technique for young women for whom it is medically indicated, we cannot at this time endorse its widespread elective use to delay childbearing. This technology may not be appropriate for the older woman who desires to postpone reproduction.”

Unfortunately, many irresponsible clinics have simply ignored these professional guidelines and are aggressively marketing the procedure to healthy young women. With the recommended three cycles plus storage fees topping out at about $22,000 or more, overselling the potential of egg freezing with phrases like “set your own biological clock” can be a lucrative endeavor, especially if companies like Apple and Facebook foot the bill.

Women and infants’ health is at stake when new infertility procedures are prematurely endorsed and promoted, and new strategies are needed to reign in rogue clinics that disregard the ethical code of “do no harm.” Perhaps it is time for external oversight of an industry that has thus far been unable to regulate itself.

Miriam Zoll is the author of Cracked Open: Liberty, Fertility and the Pursuit of High Tech Babies (2013) and a member of the board of Our Bodies Ourselves. This article was originally published the New York Times and is reproduced here with permission. 

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  10:46:00 PM

15% rise in Dutch euthanasia deaths

Euthanasia cases in the Netherlands increased 15% in 2013 compared to 2012, according to the latest official statistics. There were 4,829 reported cases, although this almost certainly understates the number, as a significant proportion are not reported. The latest figures follow increases of 13% in 2012, 18% in 2011, 19% in 2010, and 13% in 2009. Most of the cases last year involved cancer, but there were 97 cases of dementia and 42 psychiatric cases. Euthanasia now represents over 3% of all Dutch deaths.

A persistent British critic of euthanasia, Dr Peter Saunders, claims the official statistics are somewhat misleading.  “These deaths represent only a fraction of the total number of deaths resulting from Dutch doctors intentionally ending their patients’ lives through deliberate morphine overdose, withdrawal of hydration and sedation.”

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  10:37:00 PM

Argentine doctors on trial for baby theft under right-wing junta

Mothers of "los desaparecidos" protesting in 1977

Separating mothers from their babies has usually been regarded as a crime, but there are few instances more egregious than baby theft by the Argentine 1976-1983 military junta. Now in their 80s and in failing health, two doctors and a midwife have been put on trial for their role in this dark chapter.

They are accused of participating in a policy of ending the bloodlines of leftists in order to reorganise society. About 500 pregnant women were imprisoned by the junta. When they gave birth, their babies were taken and adopted by military families. The women were killed or were “disappeared”. About 115 of these children, now in their 30s, have been reunited with relatives. The rest have not been located.

The two doctors, Norberto Bianco and Raul Martin, and the midwife, Yolanda Arroche, have been accused of participating in the systematic theft of nine infants. Bianco has already been found guilty of taking one of the babies.

"It's a very important trial because it will judge the complicity of doctors and midwives who were directly responsible for these crimes against humanity," said 36-year-old Francisco Madariaga, one of the children. Arroche helped to organise his kidnapping and to falsify his birth certificate.

"With this trial we'll be able to learn what they did with our mothers the day after we were born, know that there will be a punishment and justice will triumph because we are the living proof of the crime," said Madariaga. He discovered his  true identity in 2010 and was able to find his biological father. His mother was 24 and seven months pregnant when she was arrested. Her body has never been found. 

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  10:30:00 PM

Gene of the week: paedophilia

Add paedophilia to the growing list of genetically-determined attractions, preferences and predispositions. In a New York Times op-ed, a law professor from Rutgers University contends that paedophilia is not a matter of choice. Margo Kaplan writes that:

“Recent research, while often limited to sex offenders — because of the stigma of pedophilia — suggests that the disorder may have neurological origins. Pedophilia could result from a failure in the brain to identify which environmental stimuli should provoke a sexual response. MRIs of sex offenders with pedophilia show fewer of the neural pathways known as white matter in their brains. Men with pedophilia are three times more likely to be left-handed or ambidextrous, a finding that strongly suggests a neurological cause. Some findings also suggest that disturbances in neurodevelopment in utero or early childhood increase the risk of pedophilia.”

Ms Kaplan admits that paedophiles do not have to succumb to their urges, so they are still responsible for their actions. However, they do have an unrecognised disability. She is campaigning to amend US legislation so that they will not be discriminated against in employment, education and medical care.

“The Americans With Disabilities Act of 1990 and Section 504 of the Rehabilitation Act of 1973 prohibit discrimination against otherwise qualified individuals with mental disabilities, in areas such as employment, education and medical care. Congress, however, explicitly excluded pedophilia from protection under these two crucial laws.”

“It’s time to revisit these categorical exclusions,” she concludes.

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  10:21:00 PM

Korean stem cell fraud in technicolour

The only trailer for “Whistle Blower”, a just-released Korean feature film about the biggest fraud in the world of science in decades, lacks English sub-titles, unfortunately. However, with a tense soundtrack, grim faces and menacing crowds, the message is clear enough: a collective hysteria gripped South Korea when Hwang Woo-suk claimed to have cloned human embryos and produced live-saving embryonic stem cells.

The journalists who exposed Hwang’s unethical mendacity were regarded as heartless and unpatriotic. According to the Wall Street Journal:

“Ryu Young-joon, the real whistleblower, told science journal Nature in January this year that had his identity leaked online and he and his family went into hiding for six months after the first program was broadcast following threats from Dr. Hwang’s supporters.”

Let’s hope the producers make the film available with English sub-titles soon. (Thanks for the tip to Pete Shanks at Biopolitical Times.)

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  10:19:00 PM

Mars Exploration Bioethics 101

All Star Trek fans will be familiar with ethical dilemmas in deep space. However, they might not be aware that bioethicists have opened serious discussions as projects for the exploration of Mars advance. An American group called Inspiration Mars plans to launch a married couple to fly around Mars in 2018 and return to Earth. A Dutch group called Mars One is seeking two men and two women to establish a settlement on Mars in 2024. It will be a one-way trip.

In Slate, Patrick Lin and Keith Abney of the Ethics + Emerging Sciences Group discuss some of the ethical challenges which such expeditions will probably encounter – “a sort of Astronaut Bioethics 101”.

Lifeboat ethics. What happens if an accident reduces the amount of air or other resources for a four-man flight to two or three? Should the astronauts draw straws to decide which one should die? Should they kill the astronaut who adds the least value to the mission?

“…  many things can go wrong on Mars. Given the dangers and severely limited resources, including medical, what should astronauts do if they need to choose between the lives of their fellow astronauts, a so-called lifeboat decision? This is a question best answered in advanced and not during the panic of the moment, when our judgment may be compromised.”

Pregnancies in space. A space child could be seriously handicapped because of space radiation and micro-gravity during the flight and on Mars. So how should the Mars mission deal with sexual tensions? Inspiration Mars handles this by recruiting a married couple. Mars One is more relaxed about its criteria, but notably silent about the psychological consequences of forcing men and women to live together in confined quarters. Should abortions be allowed in space? Should astronauts be sterilized before leaving?

“… it would seem patently unethical to even conduct these sorts of experiments today in space or anywhere else, at least with human subjects. Again, the physical and psychological dangers of procreating and living outside of Earth can seem inhumane, especially for involuntary subjects (the children). Yet many plans for space exploration already take it as a foregone conclusion that humans will reproduce in space.”

Psychology and privacy. The astronauts would effectively become a long-running reality-TV show. Their every action would be monitored. Mars One recently announced that it had teamed up with the Dutch reality-TV production company Endemol to cover the training program for 705 applicants.

The risks of private enterprise. What if the company backing the trip runs out of money and cannot afford to resupply the station or bring the astronauts back home? As Karl D. Stephan, an engineering ethicist, comments on MercatorNet:

“What if Mars One barely manages to get their first folks on Mars and then runs out of money? Even the most debauched reality-TV shows up to now have not proposed to show us live scenes of slow starvation, but that's what we'd be dealing with. What would the dying colonists be thinking?”

Notwithstanding these problems – all of them quite obvious after a moment’s reflection – 200,000 people applied for Mars One.

Footnote:  Neil Armstrong and Buzz Aldrin walked on the Moon and lived. But if the 1969 NASA mission had failed, President Richard Nixon had a speech prepared. It concluded: “For every human being who looks up at the moon in the nights to come will know that there is some corner of another world that is forever mankind.” What is Plan B for the Mars One spin doctors?

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  9:43:00 PM

What does the public really think about the dead donor rule?

A new study in the Journal of Medical Ethics claims that the US public is in favour of waiving the dead donor rule in certain circumstances. The study, produced by researchers from Florida State University College of Medicine, examined the opinions of 1056 US citizens – a sample intended to provide a rough cross-section of US society. 

The researchers asked participants to complete an online survey, presenting them with a vignette of a man in a vegetative state, and asking whether it should be legal for him to donate his organs even if it causes his death. Participants were also asked more general questions, such as whether it should be legal for doctors to remove organs from consenting vegetative patients despite it causing their death, and whether they themselves would donate their organs if they were in a vegetative state.  

The study found that 71% believed the patient described in the vignette should be allowed to donate his organs if he had pr0vided an advance directive. 53% of participants said they would donate their own organs if they were in a vegetative state.

Despite this, 69% of respondents said that it was ‘somewhat’ or ‘very important’ for a patient to be dead before their lungs and heart were removed.

The authors of the study concluded, “There appears to be public support for organ donation in a scenario explicitly described as violating the dead donor rule.” They do, however, acknowledge the sensitivity of respondents to questions to questions that have been personalised. The vignette on which their conclusions were based is ultimately one of these. 

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  8:46:00 PM

New infertility treatment results in successful birth

A woman in Sweden has become the first person to give birth after a womb transplant. The 36-year-old woman, a subject in a novel study into womb transplantation, received a transplant from a unrelated 61-year-old donor last year. The woman conceived via IVF and gave birth to a healthy baby boy earlier this year. 

The doctors conducting the procedure said that strong immuno-suppression drugs are vital to prevent wombs being rejected. The womb has to be removed after birth, due to the danger posed by long-term use of the powerful suppression medication. 

Prof Mats Brannstrom, who led the transplant team, described the birth in Sweden as a joyous moment.

“That was a fantastic happiness for me and the whole team, but it was an unreal sensation also because we really could not believe we had reached this moment.”

In an anonymous interview with the AP news agency, the boy’s father said: “It was a pretty tough journey over the years, but we now have the most amazing baby.”

The woman is one of seven women who have undergone successful womb transplants. The other six women are all now more than 28 weeks pregnant. 

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  12:34:00 PM

Humanising end-of-life care

A new book published by best-selling author Atul Gawande presents a strident criticism of aged and palliative care in the US. In Being Mortal: Medicine and What Matters Most in the End, Gawande argues that US healthcare system is failing to provide ‘quality of life’ to patients receiving end-of life-care. The author, a Rhodes Scholar and one time public health advisor to the Clinton administration, argues that general medicine overlooks serious psycho-social issues facing elderly patients, prioritizing the provision of  “treatments that addle [their] brains and sap [their] bodies for a sliver’s chance of benefit.”

There needs to be a paradigm shift, Gawande writes.

People with serious illnesses have priorities besides simply prolonging their lives. Surveys find that their top concerns include avoiding suffering, strengthening relationships with family and friends, being mentally aware, not being a burden on others and achieving a sense that their life is complete. Our system of technological medical care has utterly failed to meet these needs, and the cost of this failure is measured in far more than dollars. The question therefore is not how we can afford this system’s expense. It is how we can build a health care system that will actually help people achieve what’s most important to them at the end of their lives.

Gawande blends his professional expertise with personal experience, drawing extensively upon his experience of the passing of friends and family. He is not only a highly accomplished doctor, but also a talented writer.

“Being Mortal” is a valuable work, and a timely one. By 2044, there will be as many people in the world who are over 80 as there are under 50. Gawande reflects that, “It is not death that the very old fear ….It is what happens short of death — losing their hearing, their memory, their best friends, their way of life.”  These are what matter in the end.

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  12:13:00 PM

A youthful voice enters the assisted suicide debate

A young terminally ill woman in the US has reignited assisted suicide debate by publishing a video online describing her plans to take her own life.

29-year-old Brittany Maynard, who has been diagnosed with terminal brain cancer and given a prognosis of six months to live, describes her dire situation in an emotive You-Tube video that has already received six million hits. Maynard says she will take her own life on November 1st, using barbiturates that she has legally obtained in the US state of Oregon.

In the video she describes in minute detail how she plans to take her life (in her bedroom, surrounded by her family, with her favourite music playing). “I do not want to die”, Maynard says. “But I am dying. And I want to take my life on my own terms”. Maynard has partnered with the pro-assisted suicide group Compassion and Choices to campaign for the legalisation of AS in all US states.

Bioethicist Arthur Caplan says Maynard’s campaign is attracting much support amongst a younger Americans. “She may not be bringing any new arguments into the controversy, but she is bringing a whole new crowd of concerned younger people into the discussion. Those who have followed the elimination of laws against homosexuality and homosexual marriage know what that means.”

In a powerful blog post bioethicist Wesley Smith criticises the media spectacle that has developed around Maynard’s story. “By breathlessly pushing the Maynard story, the media are pushing suicide. This totally violates media guidelines for reporting suicide stories issued by the World Health Organization. ” Pro-euthanasia advocates are exploiting Maynard’s tragedy, Smith argues.

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