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  5:00:00 PM

Pistorius verdict - disability is not a defence

Oscar Pistorius is set to be convicted of negligence but not murder, following a six-month trial obsessively followed by the international media.  

Judge Thokozile Masipa found that prosecutors had failed to prove beyond reasonable doubt that Pistorius intended to kill his girlfriend Reeva Steenkamp. “There just aren’t enough facts to support such a finding”, she said. She did, however, find that Pistorius had been negligent in firing four shots into the bathroom of his house. “I am of the view that the accused acted too hastily and used excessive force,” Ms. Masipa said. “It is clear that his conduct was negligent.”

Judge Masipa rejected Pistorius defence that disability-induced anxiety had led him to overreact to the situation. "The accused isn't unique in this respect. Women, children the elderly and all those with limited mobility would fall under the same category," Ms. Masipa said, one of several admonishments she delivered to Mr. Pistorius. "Would it be reasonable if without further ado they armed themselves with firearms? I don't think so”.

Late in the trial medical expert Wayne Derman testified that Pistorius was a complex individual suffering from “stress and anxiety”. “You have a paradox of an individual who is supremely able and an individual who is significantly disabled”, he told the court. Derman claimed “the accused lacked criminal capacity at the time he fired the shots because of an involuntary, reflexive response.”

Ms. Masipa said she disagreed with Derman’s submission. “The accused clearly wanted to use the firearm”, she said.

Disability rights groups have criticised the Pistorius’ defence team. The president of the (US based) National Organisation on Disability described Pistorius’ disability defence as “exploitation”. 

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  4:48:00 PM

Should we criminalise scientific misconduct?

Scientific misconduct is bad, but should it be a crime? One high profile academic says yes.   

In a recent interview with New Scientist, Dr. Richard Smith, former editor of the British Medical Journal, argues that the criminalisation of research fraud is a necessary measure.

Smith suggests that scientists found guilty of misconduct “can’t be trusted” and yet many “have simply carried on with their careers.”

“Science itself has failed to adequately deal with misconduct”, he said.

Smith argues that scientific fraud causes serious social harm, citing as an example disgraced autism researcher Dr. Andrew Wakefield. Wakefield’s now discredited study on the link between vaccination and autism caused a massive drop in the number of childhood vaccinations.

Smith also argues that the nature of science means scientists should be held to a higher standard than the general public.

“The temptation to ignore, undermine, or even falsify the offending data is huge. Only those with the highest levels of honesty can accept, let alone be delighted, when data destroy their theories.”

Smith's comments echo the remarks of Dr Zulfiqar Bhutta, Robert Harding Chair in global child health and policy and Co-Director of the Centre for Global Child Health at the Hospital for Sick Children, Toronto, in a BMJ interview last year. Dr Bhutta argued that current sanctions against fraud are insufficient. "additional deterrence through punitive measures such as criminal proceedings should be added to the repertoire of measures available", he said. 

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  4:28:00 PM

Executed prisoners may be part of cadaver exhibition

A human rights group is calling on Canadian authorities to investigate the possible use of executed Chinese prisoners in an exhibition of ‘plastinated’ corpses. 

Bodies Revealed, an exhibition open in Niagara Falls, contains 20 preserved full human bodies, displayed in various positions, as well as 200 specimens of body parts. The specimens are preserved using a technique know as ‘plastination’, in which water and fat from the body are replaced with reactive resins and polymers.

Choose Humanity, a group that aims to draw attention to human rights abuses in China, claims that the bodies may come from Chinese prisons without individual consent. “We’re concerned that the presenter of these exhibitions does not have any form of consent whatsoever to show these bodies,” said Joel Chipkar, spokesman for Choose Humanity. “If these bodies do not have consent to be shown, these bodies are being shown illegally in Canada.”

Premier Exhibitions, the owners of the exhibition, offered no response to the complaint.   

However, a disclaimer on their website confirms the remains are from Chinese citizens or residents “originally received” by Chinese police. “The Chinese Bureau of Police may receive bodies from Chinese prisons. Premier cannot independently verify that the human remains you are viewing are not those of persons who were incarcerated in Chinese prisons,” the disclaimer states. “Premier relies solely on the representations of its Chinese partners and cannot independently verify that they do not belong to persons executed while incarcerated in Chinese prisons.”

Joel Etienne, a lawyer representing Choose Humanity, believes there may be a criminal offence related to causing an indignity to a body. He has requested that an inquiry be conducted and that authorities stop the bodies from leaving Canada. 

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  4:19:00 PM

Having a laugh at euthanasia

A new Israeli film attempts to offer a humorous look at euthanasia. The Farewell Party, directed by young auteurs Sharon Maymon and Tal Granit, is a dark comedy about a group of Jerusalem retirement-home residents who create a euthanasia machine to put a dying friend out of his misery — and then face a moral dilemma when others come seeking the same service. Maymon and Granit say that want to teach people how to “laugh about death”.

“We really believed in this movie, what it says. It's very important for us to raise these questions”, Maymon said.

The film has met with significant criticism both within Israel and abroad, and it has been difficult for its producers to find distributors. Nevertheless, it received positive reviews at the Venice Film Festival and has been selected for screening at the 2014 Toronto Film Festival. 

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  5:45:00 PM

Women risk lives for IVF

Women are putting their lives in danger by purchasing illegal IVF drugs from the online auction site EBay. Drugs can be bought off the website for a third of the normal market price, and many desperate women are turning to it as a last resort.

The fertility drugs include brand names Suprecur, Cetrotide and Menopur. They are hormone treatments used to stimulate the ovary to produce more eggs to increase fertility and as part of IVF procedures.

One British woman, 26-year-old Lorraine Davy, almost died after taking the ovulation stimulation drug Clomid. “I got rushed into A&E and they did an ultrasound and the doctor said I had a massive cyst on my ovaries”.

The British Medicines and Healthcare Products Regulatory Agency (MHRA) has contacted EBay to have the drugs removed from auction. 

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  4:04:00 PM

At long last, a follow-up study of “cytoplasmic transfer”

The United Kingdom is debating the merits of “three-parent embryos” to alleviate the burden of serious mitochondrial diseases. Scientists have reassured the public that this procedure will produce healthy children.

These assertions are largely speculative. However, something similar has happened before. About 30 children conceived from this technique have been born, 17 of them from an American IVF clinic between 1996 and 2002, when US government authorities put a stop to it. At the time the Saint Barnabas Medical Center, in New Jersey, called it “cytoplasmic transfer” and billed it as a way of jump-starting tired eggs. Twelve years after the US Food and Drug Administration recommended a retrospective study to see how these children have fared, the clinic is finally doing one.

Thirteen-year-old Alana Saarinen (pictured above with her parents) is one of those children. A godsend to her mother, who had a history of infertility, she is healthy, normal and cheerful. But her parents were never contacted about her progress. “I wish someone would, so they could see how healthy Alana is,” her mother told the London Telegraph.

The data will be of great relevance to the debate in the UK, although it will probably not be available before Parliament votes.

Jacques Cohen, the scientist who carried out the cytoplasmic transfer on the 17 IVF babies told the UK newspaper The Independent that no follow-up on the children had ever been done, despite the highly experimental and risky nature of the technique. “The current follow-up study is ongoing and results will be made available in a medical journal,” Dr Cohen said, although he is no longer working at St Barnabas.

Cytoplasmic transfer does differ from mitochondrial transfer. In the former, the mitochondria from both eggs are mixed together. In the latter, only the donor egg’s mitochondria are used. What little is known about cytoplasmic transfer is not promising. A report from the Food and Drug Administration in 2002 pointed out that there had been two instances of Turner Syndrome (one miscarried and one aborted) amongst 30 pregnancies. A paper by Cohen published in 2001 noted that an 18-month-old child had been diagnosed with a “pervasive developmental disorder”.  

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  2:12:00 PM

British MP blasts “three-parent embryos”

A British politician has blasted proposals for “three-parent embryos”. In a terse summary of objections to the practice of mitochondrial transfer to prevent serious diseases Sir Edward Leigh, a Conservative MP, told the House of Commons this week.

He points out that despite strong support from UK scientists and bioethicists and generally favourable treatment in the media, no other country in the world has authorised modification of the human genome. “Do we really want to become a rogue state in terms of bioethics?” he asks.

He also argues that the procedure “cures” no one. It simply prevents the birth of handicapped children. But this comes at the cost of destroying a human embryo for its “useful parts”. “There is no way that that can be considered ethical,” he says.

“… we are dealing with entirely separate issues when we talk about genetically modified food and what we are dealing with now, which is genetically modified people. We have only in the past 100 years come to terms with the debilitating, restrictive and oppressive results of centuries of racism buttressed by pseudo-scientific notions that have since been proved entirely false. How much more of a problem will we be confronted with when humanity is divided between the modified and the unmodified?
“… The mitochondria that contain DNA interact with the nucleus and many scientists therefore believe that they contribute material to the identity of an individual. Bioethicists have up until this point expressed almost universal consensus on germ-line genetic modification of our fellow humans, rejecting it as grievously immoral and completely unethical.
“The consensus is worth pointing out as we must know what the proponents of mitochondrial transfer are asking us to dissent from. They are asking us to dissent from opinion in every other country in the world. In this age of globalisation, we will be divorcing ourselves from the entire community of nations in terms of bioethics. Do we really want to become a rogue state in terms of bioethics?
“No one can deny the debilitations and hardships that these diseases cause. No one is seeking to downplay that suffering, but this is not about a cure. This will neither heal nor cure a single human being suffering from these diseases.
“What is worse, when we talk about pronuclear transfer, is that that effectively requires the creation of human beings for the sole purpose of harvesting their useful parts. Is that really the sort of society in which we wish to live, in which persons—individuals—are created, their parts harvested and then destroyed, merely to provide for other human beings? There is no way that that can be considered ethical, whether in terms of purely rational deductive natural law, or by the system of Christian ethics on which we in this country have traditionally relied.” 

Naturally, this controversial issue had strong defenders as well. Chi Onwurah, MP for Newcastle upon Tyne Central, presented the views of scientists at the University of Newcastle, who are passionate promoters of the technique. In her view, mitochondrial DNA represents only a tiny sliver of our genetic endowment, so small that it is not worth worrying about. She also used a slippery slope argument: if gestational surrogacy, which involves three parents, is already legal, how could the government possibly object to mitochondrial transfer?

"The embryo would carry just 13 out of 23,000, or 0.056%, of the genetic material from the mitochondrial donor. As the right hon. Member for Havant (Mr Willetts) said, it is not the nuclear DNA, so the child’s appearance, personality and other features are not affected. In Britain, the egg donation and surrogacy principle, whereby more than two parents can contribute biologically to the birth of a child, is already recognised. Medical procedures that introduce a donor’s biological material are also long accepted. The headlines, such as the BBC’s recent “Mum plus dad plus mum”, are not only sloppy and sensational, but unscientific. I would like the BBC’s other programme, “More or Less”, to comment on whether giving 0.056% of genetic material and 0% of nuclear DNA really constitutes being called “mum”.
"The UK is carrying out pioneering research on mitochondrial diseases. This country has the opportunity to be at the leading edge of the world in preventing such terrible diseases. It has taken us years to get to this point. Never before has a technique had such rigorous investigation, and ethical and scientific analysis. It is therefore incredibly important that progress does not stall."


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  10:35:00 PM

The ethics of transgender fertility

This month’s issue of LGBT Health contains a fascinating interview with two Boston fertility specialists who cater for gays and lesbians who want to become parents. Dr Samuel Pang, one of the first doctors to help gays have biological children through gestational surrogacy, says that his passion “is to get the word out to the LGBT communities that there are options available if people want to have genetically related children”.

Perhaps the most controversial aspect of their work is provisions for the fertility of boys and girls who are transitioning to the opposite sex. “For children and young adolescents, it is often the parents who are thinking about future reproductive capacity, because they would like the possibility of grandchildren, and because they are looking after the future interests of their children,” says Dr Anderson Clark, a reproductive biologist.

The problem is that puberty-suppressing treatment also impairs the children’s reproductive capacity. “Some trans boys (ie, girls) receive puberty-suppressing treatment and never produce mature ovarian follicles that could be stimulated for harvest and cryopreservation of eggs,” says Dr Clark. And the problem is accentuated with trans girls (ie, boys) because their spermatozoa are still developing. However, it has been done on individuals as young as 11. “The quantity of sperm collected from someone this young would likely be low and, for some individuals, may not be mature enough to fertilize an egg. But those sperm might be used with intracytoplasmic sperm injection (ICSI), a well-developed fertility treatment, once the individual is ready to have children,” says Dr Clark.

And the interviewer, Dr Evan Eyler, of the University of Vermont, remarks on the progress which has been made in the past 20 years:

“It was not all that long ago that lesbian couples with no infertility problems, simply needing donated sperm, were denied services on moral or religious grounds. At this point, lesbians without infertility problems are getting pregnant with donated sperm, and the type of work that you are describing is opening up additional options: Having one partner be the egg donor and the other partner carry the pregnancy, so that both have a biological relationship to the child, or maximizing fertility for lesbian and bisexual women who have infertility problems.
“Efforts focused on finding options for male couples to have their own biological children have also had some reasonable success. At this point, some couples with a transgender partner are getting fertility services, and transgender youth who are not yet at the point of considering reproduction are beginning to have options for fertility preservation. Most of the trans children and trans teens are not thinking about fertility preservation because of their youth, so it is the parents who are inquiring about these services in many cases, and you are discussing options with them.
“I am impressed by how far this field has come in just a couple of decades, both technically and politically.”

However, there are still ethical issues. The weightiest is the doctor’s responsibility for the fertility of young trans patients. “We cannot count on the transgender children and teens to think about it, because, when they are going through the crisis of gender identity, the last thing on their minds is having children in the future. They have much more pressing issues to deal with,” says Dr Pang.

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  9:35:00 PM

Let’s chill: New York’s egg freezing party

Commercialisation of IVF is crossing new frontiers in New York with “egg freezing parties” for career women who want to keep their options open. A company called EggBanxx will retrieve and store eggs – for about US$7,000 to $8000 per cycle. The first year of freezing is free. Here’s the pitch:

“EggBanxx is the affordable egg freezing solution created by women for women. We believe egg freezing should be easy, affordable and stress-free!   Through EggBanxx, women can preserve their fertility by freezing their eggs for later use at a fraction of the cost and at a reputable clinic. This elective procedure is becoming increasingly popular today with women who are holding off having children while furthering their education or career, or waiting to meet the right partner.” 

To promote its product, EggBanxx is organising “Let’s Chill” (what else could it be called?) parties in New York to discover how it works and how much it costs. The first one took place at the NoMad Hotel in Manhattan on August 12.

 “I don’t have a significant other . . . but I hope to one day and have kids,” one woman told the New York Post. “I want to take my fertility into my own hands, rather than put pressure on the person I have my next relationship with. I don’t want to be in the position when I’m in my late 30s and panicking because I haven’t found the right man and I’d compromise and take anyone off the street!”

Or as EggBanxx’s marketing director described her own egg-freezing experience, “The pressure is off, and I feel so empowered. I can now concentrate on my career and becoming who I want to be before having children!”

So how does EggBanxx make its money? It acts as a broker for egg retrieval by its network of IVF clinics around the US and for low-cost finance. It also offers a 15% discount on what IVF clinics charge for the procedures and medications.

All over the world, fertility experts warn women that their fertility is finite, that after 35 it drops sharply and that it is best to have children early. But freezing cannot guarantee a baby, especially since most women who freeze their eggs have entered an era of declining fertility. According to a survey by the American Society for Reproductive Medicine, the average age at which women freeze eggs is 34 – already late.

Lord Robert Winston, a British IVF pioneer, argues that egg freezing is “a confidence trick” that allows avaracious IVF clinics to exploit the fears of desperate women. “Women are spending vast amount of money on this treatment but the success rates simply aren’t there. In fact less than 10% of the women who do it end up getting pregnant,” he says. 

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  4:58:00 PM

Berlin opens memorial to euthanasia victims


A memorial to the 300,000 victims of Nazi euthanasia programs was opened in Berlin this week. It is striking piece of modern architecture: a 30-metre-long wall of blue glass in the open air near the Berlin Philharmonic.   

“The Nazi murders of disabled people are among the most inhumane acts of history,” says Berlin’s mayor, Klaus Wowereit. “It is high time that these victims of Nazi inhumanity finally receive their own memorial.” 

The regime had several methods of killing the mentally and physically disabled: starvation, lethal injections or chambers filled with carbon monoxide gas. The so-called T4 program became a trial run for the gas chambers of Auschwitz and other death camps. About 70,000 of the deaths occurred at the program’s headquarters at Tiergartenstrasse 4 in Berlin, thus giving the program its name, Aktion T4.

“We must denounce the inhumane distinction between a worthy and an unworthy life,” said Monika Gruetters, Germany's state minister for culture and media. “Every human life is valuable - that's the message of this memorial.”


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