May
30
 

White House backs review of gene-editing technology

The Obama Administration has backed calls for an in-depth ethical review of gene-editing technology. This move came swiftly after Chinese scientists announced that they had altered the genome of non-viable human embryos earlier in May. “The Administration believes that altering the human germline for clinical purposes is a line that should not be crossed at this time,” said John P. Holdren, the white House science advisor.

The US National Academy of Sciences (NAS) and its National Academy of Medicine (NAM) have convened an international meeting in the (northern) autumn to discuss the implications of human germline gene-editing technologies in both research and clinical applications. Holdren says that great circumspection is needed:

“Research along these lines raises serious and urgent questions about the potential implications for clinical applications that could lead to genetically altered humans. The full implications of such a step could not be known until a number of generations had inherited the genetic changes made — and choices made in one country could affect all of us.”

The NAS summit will bring together international experts to explore the scientific, ethical, and policy issues associated with human gene-editing research. A committee will consider and recommend standards, guidelines, and practices in the US and around the world. The NAS regards this as a new Asilomar conferece, a 1975 gathering which led to guidelines for recombinant DNA research.

Columbia University biology professor Robert Pollack published a strong letter in Science which sums up the unease among some scientists:

This opening to germline modification is, simply put, the opening of a return to the agenda of eugenics: the positive selection of “good” versions of the human genome and the weeding out of “bad” versions, not just for the health of an individual, but for the future of the species…

Rational eugenics is still eugenics. The best in the world will not remove the pain from those borninto a world of germ-line modification but who had not been given a costly investment in their gametes. They will emerge with the complexity of a genome different from what this technology will be able to define as “normal.” I do not think anything short of a complete and total ban on human germline modification will do, to prevent this powerful force for rational medicine—one patient at a time—from becoming the beginning of the end of the simplest notion of each of us being “endowed by our Creator with certain inalienable rights.”



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May
30
 

Ever the controversialist: Peter Singer on speciesism

Is speciesism worse than racism? In a certain sense, yes, says the doyen of utilitarian philosophers, Peter Singer, of Princeton University. In an interview in the New York Times, Singer explains that while racism still exists, most people are aware that they are wrong. However, this is far from being the case with animals.

Although it is true, of course, that we have not overcome racism, sexism or discrimination against people with disabilities, there is at least widespread acceptance that such discrimination is wrong, and there are laws that seek to prevent it. With speciesism, we are very far from reaching that point. If we were to compare attitudes about speciesism today with past racist attitudes, we would have to say that we are back in the days in which the slave trade was still legal, although under challenge by some enlightened voices.

 Singer repeated his familiar, but still disconcerting, belief that killing an intellectually disabled human being might be less wrong than killing an alert non-human animal:

… one might argue that to kill a normal human being who wants to go on living is more seriously wrong than killing a nonhuman animal. Whether this claim is or is not sound, it is not speciesist. But given that some human beings – most obviously, those with profound intellectual impairment – lack this capacity, or have it to a lower degree than some nonhuman animals, it would be speciesist to claim that it is always more seriously wrong to kill a member of the species Homo sapiens than it is to kill a nonhuman animal.



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May
30
 

British mum tells of perils of surrogacy

Another dispatch from New Frontiers of Reproduction, this time from Britain. This week  the Daily Mail (UK) painted a dismal picture of the misery of an altruistic surrogate mother, Wendy Reid. (Link no longer available.)

Ms Reid told freelance writer Alison Smith-Squire that she decided in 2012 to become a surrogate to help an infertile couple find happiness. She was married with a child of her own and her husband agreed. Through a surrogacy website she connected with a couple in their 40s, Jane and William, and agreed to go ahead with a pregnancy – although in Britain surrogacy agreements are not legally enforceable. The cost was 7,000 pounds, mostly for expenses. So Wendy inseminated herself with sperm from William.

When a baby girl was born, Wendy experienced an overwhelming desire to keep the baby. “The only thing that stopped me from wrenching Emily from them was seeing them so besotted with her,” she said.

She saw the baby every week when she gave the couple breast milk. However she became very concerned because she felt that the child was being very badly cared for. It seemed to her that she was actually starving.

So when the time came to sign the adoption papers, Wendy refused. A social worker stepped in to investigate the case. She found that Jane and William had misrepresented themselves. They were not childless. They already had three children, now in their 20s, who had been taken into care. Jane had not had a hysterectomy. Horrified, Wendy asked for custody.

But the outcome was astonishing. Jane and William were denied custody. But so was Wendy. “Social services claimed that because I’d given up Emily at birth I had a lack of emotional attachment to her.” They also said that she had emotionally neglected her 12-year-old daughter because of her excitement over the baby. She could not be a fit mother, in the opinion of social workers.

So baby Emily was adopted by a couple unknown to Wendy. Not until she is 18 will she be able to access information about her birth mother. Wendy told the Daily Mail poignantly:

“I have some unwashed clothes that belonged to Emily and find comfort in holding them close to me as they still have her smell. Otherwise I cope by telling myself Emily’s been given to a family who want her very much. And I console myself that I will see her again — when she is 18, she will be able to trace me. Not a day goes by when I don’t think of her.” 



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May
30
 

Thalidomide scandal continues to reverberate

Lyn Rowe was born in 1962 in Melbourne with no arms and no legs. She became a leading actor in a claim against the Australian distributor of thalidomide. 

A new book makes explosive claims about the business ethics of the Australian distributor of Thalidomide. The allegations are made in Silent Shock, by Melbourne lawyer Michael Magazanik, based on an affadavit by a former company employee, Hubert Woodhouse, who is now in his 80s.

About 10,000 children were born in the 1950s and 60s around the world without arms and legs. The cause was a mystery until an Australian doctor, William McBride, discovered in 1961 that Thalidomide, a drug for morning sickness manufactured by the German pharamaceutical company Grünenthal was responsible.

In 1961, several months before the drug was finally withdrawn, Bill Poole, the head of Distillers, the company which was responsible for the drug in Australia, and his executives ignored McBride’s warnings. Instead they held boozy meeting in which they discussed how the bad news would hurt sales when it became public knowledge. Meanwhile the drug was still being sold to pregnant women. Magazanik writes:

"Instead of getting thalidomide off the market immediately, Mr Poole kept promoting a drug he knew might severely damage embryos to maternity hospitals and obstetricians. He also tried to get a government subsidy for thalidomide and steadily built up a stockpile ready to flood the Australian market: 8 million pills in a Sydney warehouse, each one of which he knew might maim and kill unborn babies. And when thalidomide was exposed, Poole lied constantly to cover up his appalling, deadly behaviour, including telling bare-faced lies to the highest levels of the Australian government."

Poole has already died.

Magazanik is a lawyer with Slater+Gordon, a legal firm specializing in class action suits. He won a major pay-out for victims of Thalidomide last year in Australia. In a company press release he writes:

“When apologists say that the whole thing was an unavoidable disaster - that's rubbish. There were repeated opportunities to cut the death and injury toll short - in Germany, in Japan, in the US and in Australia. If the men at Grünenthal and Distillers hadn't been so hell bent on profit at the expense of health and safety, things could have been very different.” 



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May
30
 

Even more about Modern Families

In the latest skirmish between Nick Loeb, millionaire businessman, actor, and politician and his former partner Sophia Vergara, millionaire star of the TV show Modern Families, new weapons have been deployed.

Loeb and Vergara are fighting over two frozen embryos which they produced while living as a couple with the intention of implanting them in a surrogate mother. According to an agreement that they both signed, Vergara’s permission is needed for the implantation. Now that they have split up, she wants to keep the embryos frozen and he wants to give them life so that he can raise them as his daughters.

Loeb’s first legal strategy was to have the agreement voided. This failed. Now he wants the State of California to grant him custody of the embryos. Here is what his lawyers told the court:

“In prior cases when courts have engaged in a balancing test between the two parents, they have considered only the interests of the man and the woman in ‘procreational autonomy’ – meaning their constitutional right to decide whether to become a parent. We are asking the court to consider a third interest: the State’s interest in potential life. The United States Supreme Court has held that this is a valid interest and that it exists from the moment of conception. The California Supreme Court has also recognized this interest. Our argument is that, where there is disagreement over what should be done with embryos, this interest should create a presumption in favor of the person who wants to bring them to term.”

His lawyers have also found flaws in directions to the IVF clinic about how the embryos should be treated. It now appears that this document was not a “contract” but just a “form directive” created by the IVF clinic.

The battle continues. 



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May
30
 

Review: The Waiting Room

There is something sterile about the textbook definition of IVF – “a form of assisted reproduction where the eggs from a woman are extracted under anaesthetic and placed in a culture dish with thousands of sperm, allowing the process of fertilisation to take place.”

For its proponents, IVF is a profound gift from science to humanity – it gives infertile couples and single parents an opportunity to have a child. For its detractors,represents the intrusion of technology into procreation, the most sacred area of human experience. It evokes Huxley’s nightmarish vision of children decanted in vats and the disappearance of motherhood.

These conflicting perspectives are brought to life in Kylie Trounson’s Melbourne Theatre Company play The Waiting Room. The play is an admirable attempt to capture the emotional and moral dimensions of IVF.

The complexities of IVF

 The play is rather peculiar – philosophical yet comical, polemical yet absurd. Kylie Trounson – the daughter of IVF pioneer Alan Trouson – interweaves reflections on her own life and her father’s life with stories of couples desperately seeking IVF treatment. In the midst of this there’s also significant philosophical musing – about the ethics of IVF, human participation in creation, and Frankenstein concerns about ‘playing God’. Surprisingly Trounson engages in quite a sophisticated theatrical dialogue with the two chief opponents of IVF – feminists and the Catholic Church.

The complexity of the script is perhaps a weakness. “Dramaturgically, it bites off more than it can chew”, observed SMH’s Cameron Woodhead. And at times didactic monologues from Kylie Trouson – who has inserted herself as a prominent character in the script – get in the way of hilariously wacky dialogue, powerful drama and a stellar cast.

A human drama

Nevertheless, I think there is a lot that can be said for Trounson’s imaginative reworking of the history of IVF in Australia. IVF was a sociological turning point in 20th century history, challenging yet not fully eliminating what were taken to be immutable limitations on human procreation. And there is something about this sociological phenomenon that cannot be captured by clinical analysis. IVF is a drama that countless couples go through, and to differing degrees of success (the success rate for an average IVF cycle is estimated to be somewhere between 30-50%). It’s painful, often traumatic, and uncertain. Sometimes it ends in joy, sometimes in despair. As Trounson deftly depicts, there is something absurd in the contingency of the whole process. Both couples in the play remain childless after their IVF cycles. And to tell the story otherwise, as Trounsen herself states, would be disingenuous. 

Commercial dangers 

At least one IVF pioneer is concerned about the gross commercialisation of the IVF industry in the Western world. Trounson shares this concern, and parodies the pristine and deceptively salubrious IVF clinics of the 21st century. A character sits down in the waiting room and is handed an iPad with the profiles of different sperm donors. The blond-haired 39-year-old Brazilian architect is sold out, but the bohemian 30-something folklorist is still in stock. Raphaelo – one the play’s protagonists –has just arrived at the clinic with his partner, and immediately ridicules the affected title of the clinic, ‘New Hope’.

In the midst of all of this, the story of Alan Trouson and Carl Wood, two scientists determined to give infertile couples the opportunity to conceive, is favourably portrayed. Kylie Trounson is by no means a foe of IVF.

Yet she clearly recognizes a technological solution to childlessness is complex. IVF is not merely a scientific endeavour or a commercial enterprise. It is a deeply personal, often trying, experience. Procreating children is different from buying a new fridge. 

At one point in the play, the now-deceased Catholic bioethicist Nick Tonti-Filipini makes an appearance. Tonti-Filipini, charitably portaryed by Trouson, describes sex as “sacramental”. Today this idea might sound unrealistically poetic at best, stupidly naive at worst. Yet surprisingly The Waiting Room gives unwitting witness to the sacredness of sex and , and questions crudely commercial approaches to the anguish of infertility.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
30
 

Apotheosis now

A Jewish technohistorian believes that human beings are destined to become gods, and soon.

Professor Yuval Noah Harari of the Hebrew University of Jerusalem claims that humanity is on the verge of a major evolutionary leap, where we will overcome the confines of the human condition by integrating computers and robotics into our very being.

Speaking at the Hay Festival in Wales, Harari said he believes human beings will ‘upgrade themselves’ into god-like beings in the next 200 years:

“I think it is likely in the next 200 years or so homo-sapiens will upgrade themselves into some idea of a divine being, either through biological manipulation or genetic engineering of by the creation of cyborgs, part organic part non-organic.”

He continued:

“It will be the greatest evolution in biology since the appearance of life. Nothing really has changed in four billion years biologically speaking. But we will be as different from today’s humans as chimps are now from us."

Harari believes we will eventually be able to overcome death itself, through innovative life extension technologies.

He is, however, wary of the risk of exacerbated social inequalities. He warned that the 'cyborg' technology would be restricted to the wealthiest in society, widening the gap between rich and poor in society. In the future the rich may be able to live forever while the poor would die out.

Harari sees religion and human rights as a ‘nice ideas’ that have now become obselete.

“Religion is the most important invention of humans. As long as humans believed they relied more and more on these gods they were controllable…

“But what we see in the last few centuries is humans becoming more powerful and they no longer need the crutches of the Gods. Now we are saying we do not need God just technology…”

“Most legal systems are based on human rights but it is all in our imagination.”

Prof Harari most recent book Sapiens: A Brief History of Humankind has been translated in to more than 30 languages.



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May
30
 

Greer ruffles feathers over IVF and abortion

Feminist author Germain Greer has attacked the IVF industry, claiming that the highly commercialised treatment has ‘destroyed motherhood’.

“The concept of motherhood has been emptied out”, she said to a packed audience at the Hay Festival in Wales. “We now have a genetic mother who supplies eggs... did we sit down and talk about what eggs mean to women?”

Greer was referring to women being offered “cut-price IVF” in exchange for giving clinics their eggs for research and use. 

“In some cases you are told what has happened to them, and in other cases you are not”, she said.

Greer also said that the feminist push to legalise abortion in the 1960s had been overshadowed by ‘IVF barons’. She claimed that David Steele, the architect of the 1967 Abortion Act, acted out of political expediency, on account of pressure from influential IVF advocates.

“We got legalised abortion precisely because the fertility industry needed it… It certainly wasn't us. We could have marched until our feet fell off and they wouldn't have bothered to give us access to abortion. They were the ones who wanted to be able to terminate pregnancies at will. David Steel is a politician. He only made an act after the fertility barons told him what they needed.”

True to form, Greer pulled no punches. She even criticised gay IVF parents Elton John and David Fletcher:

"I'm a bit exercised to discover that Sir Elton John and his 'wife' David Furnish have entered on the birth certificates of their two sons David Furnish as the mother.” 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
30
 

Death of a salesman reignites assisted dying debate in UK

Euthanasia debate has again been reignited in the UK following the death of a 54-year-old British man in Switzerland’s Dignitas clinic.

Jeffrey Spector, a businessman, chose to end his life despite not being terminally ill. Spector was suffering from a spinal tumour, and feared that he would soon suffer paralysis. In an interview just a day before he died, Spector said that he was “jumping the gun”, but asked people “not to judge” him. “My family disagree, but I believe this is in their best interests” he said. In a statement released on Monday, Spector’s family said that he died peacefully on Friday the 22nd of May: “Jeffrey ended his own life in exactly the manner and at exactly the time he wanted.”

Representatives from both sides were quick to comment on Spector’s death.

Dr Peter Saunders, Campaign Director of Care Not Killing said: “This tragic case illustrates the dangers of legalising assisted suicide or euthanasia in Britain.”

“The vast majority of people with cancer or quadriplegia (which was a risk but not a present reality for this man) actually do not wish to kill themselves but rather want support and care to go on living as comfortably as possible for as long as possible”.

Jane Nicklinson, whose husband Tony died in 2012 days after losing a seven-year High Court battle to be allowed to end his own life legally, said Mr Spector reminded her of her former partner’s plight.

She said: “This man sounds so much like Tony. He did not want to end up in a situation that Tony had to endure every day and I can understand why he did what he did, so well.

But she cautioned: “We have always said that those going to Dignitas go far too early as they have to go whilst they are physically able”.



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May
30
 

65-year-old German grandmother gives birth to quadruplets

65-year-old German woman with 13 children has given birth to quadruplets, after receiving IVF in a clinic in Poland.

Annegret Raunigk,  was just 26 weeks into her pregnancy when she gave birth to three boys and one girl last week.

The babies are expected to survive, though they may suffer complications.

Raunigk was widely criticised in the German media when it was revealed that she had received IVF and fallen pregnant. For a woman of her age pregnancy entails significant risks for both mother and child.

Raunigk said she decided to have more children after her youngest daughter, Lelia, nine, asked her for a sibling. There were other motives too: “Children keep me young”, she said in a recent interview with the German tabloid Bild.

Raunigk, who had her first child at 21, is still not the oldest woman to give birth. That record is held by Rajo Devi Lohan, an Indian woman who at 70 became the world's oldest known first time mother after three rounds of IVF.

Her daughter Naveen will turn 7 later this year.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
23
 

Swiss to vote on embryo regulation in June

Switzerland will hold a constitutional referendum on June 14 to decide whether to legalize preimplanation genetic testing. Swiss law currently only permits three embryos to be created in IVF treatment because this is the number which can be immediately implanted. If the constitution is altered, it will be possible to create 12 embryos, some of which could be tested for genetic diseases and the others can be frozen.

While nearly all the political parties support the amendment, it faces a substantial opposition. Marco Romano, a parliamentarian for the centre Christian Democrats, was in favour of it until he spoke to doctors in a clinic:

“I spoke at length with a professor and I had the impression that the specialists want to use anything that technology makes possible, to the point of playing with life, reducing it to a point that is almost banal …

“In the United States, 10% of testing is used to determine the sex of the child. In Switzerland, the parliamentary debate very clearly showed the willingness of some people to go even further. In accepting PGD, we open a door and we don’t know exactly where it will take us.”

The news agency SwissInfo says that Switzerland is actually a “hardliner”, compared to other countries. Of 15 countries in Western Europe, 12 legalised PGD long ago. Even under the proposed legislation, “saviour siblings” would still be banned.

Political scientist Georg Lutz, of the University of Lausanne, told SwissInfo that voters are split on the issue:

“ it’s really hard to find any clear trends: voters of the parties on the left and right were divided and the only clear smaller trend was that people who attend religious services were more likely to be in favour of protection from manipulation and against stem cell research. The other small trend was that the French-speaking part of Switzerland leans slightly more towards science than the German-speaking part. But there’s no age difference, no enormous gender difference.”



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May
23
 

Leading stem cell surgeon accused of ‘scientific misconduct’

In happier days   

Italian celebrity surgeon Paolo Macchiarini, who created artificial windpipes with cadaver-derived scaffolding and stem cells, has been found guilty of scientific misconduct by an investigator from Sweden’s Karolinska Institute.

Dr Macchiarini’s operations were widely reported and seemed to bring almost miraculous relief to three patients. But the post-operative reality was different. Two of the patients have died, and the third has been hospitalized in intensive care for nearly three years.

The investigation was prompted by doctors caring for the patients who found that their condition was not nearly as good as Dr Macchiarini described in his publications. According to the investigator, the surgeon “omitted some data and also fabricated or falsified some data regarding the postoperative state of patients”.

The report is not yet available in English but should be released soon. Consult Retraction Watch for further developments. 



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May
23
 

Woman at centre of Indian euthanasia debate dies

Aruna Shanbaug  

A woman at the centre of a debate over euthanasia in India has died after 42 years in a minimally conscious state. In 1973 Aruna Shanbaug, a 25-year-old nurse in Mumbai, was brutally assaulted and strangled by a contract cleaner. She did not die, but was left severely brain-damaged.

In 2010 journalist Pinki Virani applied on her behalf for euthanasia. The case went all the way to the Indian Supreme Court which decided that while “passive euthanasia” by withdrawing nutrition and hydration might be permitted, the decision was up to her surrogate decision-maker. In Aruna’s case it was King Edward Memorial Hospital and it adamantly supported on-going palliative care.

It was a complex case and in their judgement, Justices Markandey Katju and Gyan Sudha Misra acknowledged that “we feel like a ship in an uncharted sea, seeking some guidance by the light thrown by the legislations and judicial pronouncements of foreign countries”. In the end they set down that “life support” can be withdrawn provided that a close relative or “next friend” or even the doctors request it. However, approval must be sought from one of India’s 21 High Courts to ensure that the decision is in the best interest of the patient. This, the justices insisted, was essential.

“We cannot rule out the possibility that unscrupulous persons with the help of some unscrupulous doctors may fabricate material to show that it is a terminal case with no chance of recovery. There are doctors and doctors. While many doctors are upright, there are others who can do anything for money.”

For 42 years the staff of King Edward cared for the disabled woman. The judges paid tribute to their devotion in 2011. “The whole country must learn the meaning of dedication and sacrifice from the KEM hospital staff. In 38 years Aruna has not developed one bed sore,” the judges wrote. They praised “their noble spirit and outstanding, exemplary and unprecedented dedication in taking care of Aruna for so many long years. Every Indian is proud of them.”

“We are happy she died a natural death. Mercy killing was not right for her, she was as alive as anyone else and used to respond to us,” said Anuradha Padhare, one the nurses who looked after Shanbaug, told the Indian Express. “We were her guardians as her family refused to take her home. We were her only family.”



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May
23
 

Canadian bioethicist questions value of Down syndrome detection

Do we really need ever-more accurate tests to detect Down syndrome in unborn children? This is the question posed by Canadian bioethicist Chris Kaposy in the Impact Ethics blog. He questions “a ‘corporate arms race’ to develop prenatal tests for Down syndrome that are accurate and less invasive, cheaper, easier to administer, and that can be administered earlier in pregnancy than previous methods of testing.” Most of the time – some estimates are as high as 90% -- women who test positive undergo an abortion.

“The larger ethical question,” he writes, “is whether this pursuit of profit is good for people who have Down syndrome or even good for the rest of us.”

Recent research by Dr Brian Skotko at Massachusetts General Hospital suggests that most Down syndrome people and their families are happy with their lives. “The arms race to develop these tests is not being driven by the needs of people with Down syndrome or the needs of their families,” he says. In fact, says Dr Kaposy,

“…  the social utility of these tests is incommensurate with the effort needed to create them. In contrast to the scientist who devotes her life to the treatment of cancer, … devotion to create a test that helps parents to avoid the birth of people who tend to enjoy their lives seems somehow less ambitious, or off the mark.”



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May
23
 

Fear of death driving push for euthanasia, says medical ethicist

The fear of a miserable death in a hospital bed rather than at home is driving public support for mercy-killing law in the UK, a Birmingham City University academic has warned.

Responding to a report published on Wednesday by The UK Parliamentary and Health Service Ombudsman, listing some of the worst cases in recent years of terminally ill patients dying without dignity, Timothy James, senior lecturer in Medical Law and Ethics at Birmingham City University, said: "For most people, dying at home isn't about autonomy, it's about dealing with the fear of dying in a hospital with poor end of life care. The fear of dying in misery in a hospital is what is driving the assisted dying debate."

"We've known for a long time now that the option should be available for terminally ill patients to die at home. We are seeing too many cases where proper pain control is not being given."

Referring to care in the English NHS, the ombudsman’s report details some of the cases investigated over the last four years, including that of a 29-year-old male dying of cancer who was admitted to hospital and left without pain relief for 11 hours.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
23
 

Filipino nurse jailed for double murder

A Filipino nurse working in Britain has been found guilty of two counts of murder after deliberately contaminating the intravenous fluids of patients.  

Victorino Chua, 49, described by detectives as a narcissistic psychopath, injected insulin into saline bags and ampoules while working on two acute wards at Stepping Hill hospital, Stockport, in June and July 2011.

In addition to two patients who died from the insulin overdose, another patient suffered severe brain damage and dozens of others grievous bodily harm.

Chua took the insulin from unlocked fridges in Stepping Hill’s treatment rooms.

When a forensic scientist examined some of the saline bags, it was noticed that there was a small v-shaped cut to the rubber septum of the resealable bung and two puncture holes to the inner membrane of the bung consistent with a hypodermic needle.

The judge presiding over the case, Mr. Peter Openshaw, said that Chua showed no remorse, and described his crimes as “strikingly sinister and truly wicked.” Chua chose not to personally administer the insulin to most of the patients, so it was left to chance which of them were poisoned.

Chua was arrested six months after the first poisoning incident. Police conducted an extensive investigation and, after constructing a Venn diagram of staff rostered on at the time of the poisonings, managed to narrow down a list of potential suspects to Chua alone.

Investigations by police found inconsistencies in Chua's medical qualifications, which they raised with the Department of Health and the Home Office, as well as contacting the Nursing and Midwifery Council (NMC).

Since the Chua case, the NMC has audited all 11,500 nurses from the Philippines who arrived between 2002 and 2006 and found none that required any regulatory action. “There were no irregularities, although obviously we don’t have the capacity to detect any highly sophisticated frauds,” a NMC spokeswoman said.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
23
 

Stem cell clinics are the ‘Wild West’ of medicine, say critics

Regulators in the United States and Australia are examining the burgeoning field of stem cell therapies. Using patients’ own stem cells extracted from fatty deposits in their bodies, doctors are treating dozens of conditions ranging from sports injuries to multiple sclerosis to dementia to hair loss.

However, the doctors don’t know how the stem cells work and there often is no evidence that they do work, other than optimistic anecdotes. According to a report by AP, more than 190 clinics in the United States are offering stem cell therapies. "It's sort of this 21st century cutting-edge technology. But the way it's being implemented at these clinics and how it's regulated is more like the 19th century. It's a Wild West," says Dr. Paul Knoepfler, a stem cell researcher at the University of California at Davis.

Many of the clinics are franchises organized by large for-profit companies which provide equipment and some training seminars. The largest, says AP, is the Cell Surgical Network, co-founded in 2012 by, who a former Beverly Hills plastic surgeon, Dr Mark Berman. The company’s website lists at least 28 conditions which can be treated with injections of a “fat-based soup”. "I don't even know what's in the soup," Berman told AP. "Most of the time, if stem cells are in the soup, then the patient's got a good chance of getting better."

The US Food and Drug Administration has been unable to regulate the stem cell market because the stem cells come from the patient and are not new drugs and only a minor surgical procedure is needed.

Stem cell scientists are highly critical of the industry. On his blog, Dr Knopfler interviewed Dr Berman and his partner and then drew his own conclusions: “

“One of the deepest differences that I have with Drs. Lander and Berman is related to my core belief in evidence-based medicine. I believe in having compelling pre-clinical evidence before you start to do a specific kind of new or experimental medicine on human patients. To my way of thinking, for example, prior to getting even one patient involved with an experimental medical approach you should do pre-clinical studies on animals for a given medical condition with the specific medical intervention in question. Then you collect data on safety and efficacy …

I do not personally believe in collecting millions of dollars from patients for interventions that are still arguably, in my opinion, experimental.”

In Australia, the Therapeutic Goods Administration, is studying whether autologous stem cell therapies ought to be regulated. Dr Martin Pera, of Stem Cells Australia, a consortium of stem cell researchers said in his submission to the TGA that “Immediate action is required to curb the growth of exploitative unproven and unfounded practices”.

"Under the current system there is no requirement for monitoring or reporting adverse events. We're completely in the dark whether these treatments have the potential to do harm or any good," he told the Sydney Morning Herald.



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May
23
 

US women go into debt for IVF

About 70% American women who resort to IVF to have a child go into debt. According to a small survey reported in the Wall Street Journal, 44% borrow more than US$10,000.

“Why all this debt? IVF is expensive. Each treatment can cost $15,000 to $20,000, and for most women, health insurance doesn’t cover it. More than 80% of the women in Prosper’s survey underwent at least two IVF treatments, or ‘cycles.’”

The imperative to have a child is so great that women are deferring other important expenditure, including buying a home, to pay for fertility treatment.

“If treatment costs don’t fall, they could become a big source of financial stress for the growing ranks of Americans putting off families to achieve some modicum of security. Before saving for Junior’s college education, couples may need to save up to have Junior himself.”



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May
21
 

Interview: Daniel P. Sulmasy on informed consent

Daniel P. Sulmasy is the Kilbride-Clinton Professor of Medicine and Ethics in the Department of Medicine and Divinity School at the University of Chicago, where he serves as Associate Director of the MacLean Center for Clinical Medical Ethics and as Director of the Program on Medicine and Religion. He is also a member of the Presidential Commission for the Study of Bioethical Issues (PCSBI). Professor Sulmasy has written numerous books on topics related to bioethics, and published many articles in bioethics and medical ethics journals.

In this exclusive interview with BioEdge, Professor Sulmasy shared his thoughts on the complex notion of informed consent. 

******

Xavier Symons: Some academics deride the ‘fetishization’ of informed consent or the ‘cult of consent’. What's going on? Most of us see it as our greatest safeguard.

I understand the sentiment, but informed consent is still critically important. Informed consent has become bureaucratized and, unfortunately, therefore equated by many health care professionals with merely obtaining a signature on a form. Too few practitioners take consent to be a process and a serious moral obligation.

While this can also be true in the research setting, I also think too many ethicists and researchers view informed consent as a sufficient justification for enrolling in human experimentation, and that is also misguided. Some experiments are just too risky or too scientifically flawed to justify doing them even if subjects do consent. These days, patients need more than ever to be involved in their care. The informed consent process is the entrée to their involvement.

XS: You have argued that “free choice is the context of morality, not the content of morality”. Don't most doctors disagree with you?

I think, sadly, most would not understand what I mean by that statement, and were I to explain, I think they so would have internalized “respect for autonomy” as a principle that they would need to listen to me for a long time to be persuaded that I am correct. As Aristotle puts it, ethics is about what to do, when what to do is up to us.

The goal of ethics is not to increase people’s choices. Rather, ethics concerns the quality of the choices that people freely make. While we ought not to unduly limit people’s freedom, ethics ought to help people to use their freedom to make good choices. So, we ought not merely to be giving patients lists of medical options like a menu in a restaurant.

We ought to help them to make good choices, and that includes permitting physicians to make recommendations based on their experience and practical wisdom. Patients can freely decline the physician’s recommendation, but they deserve guidance to help them to make the best choices that they can make.

XS: Can't limits on informed consent be seen as a subtle paternalism?

This depends on what those limits are. Some limits on patient choice are justified and the ethical question ought to be whether patients are free to demand from the health care system whatever they choose. For example, I defend a narrow standard of biomedical futility, based on the judgment that a treatment will not work or that the patient will die soon even if the treatment is given.

Under such conditions, one does not, in my view, need informed consent from the patient or family not to provide requested interventions. This is based on the principle that there can be no moral obligation to do what cannot work, and can only result in harm to the patient. This is just common sense ethics, not paternalism. Judgments based on broader understandings of futility, by contrast, can be paternalistic. For example, if the doctor determines that a treatment might work but the quality of life expected for the patient would be too low to justify it even if the family is requesting it, that judgment would be paternalistic and, in my view, unjustified.

XS: Recently BioEdge reported the case of a pregnant Australian woman who refused a blood transfusion on religious grounds and died along with her baby. How would you have navigated this tragic situation? 

This is truly tragic. The sort of case you describe might, for instance, involve a Jehovah’s Witness who holds a religious belief that blood transfusion is gravely sinful. As a general rule, under US law, patients can refuse any treatment for themselves. Nonetheless, also as a general rule, parents are precluded from “martyring” their children.  That is, they cannot refuse life-saving medical care for their children on the basis of their own religious beliefs.

Such legal protections, however, only kick in at birth. Until that time, the mother’s right to refuse treatment trumps the effect of that refusal on her developing fetus. For instance, the US Supreme Court banned one city’s policy of incarcerating pregnant cocaine addicts to protect the fetus from the adverse effects of cocaine. So, in the case you describe, one could plead on moral grounds with such a patient on behalf of the not yet born child, but could not transfuse her, legally, against her wishes.

XS: The Grey Matters report from the President's bioethics commission suggested that patients with impaired consent capacity be included in neuroscience research. How is this consistent with protecting the disadvantaged? 

Some medical conditions that are poorly understood and urgently need more research impair the capacity of those who suffer from them to consent to research, making research difficult or impossible to carry out. These conditions are typically neurological afflictions such as Alzheimer disease. People suffering from dementia, for instance, constitute a very vulnerable population, and they deserve protection from exploitation.

Yet a total ban on enrolling such persons in research studies would be short-sighted. The Commission recommends cautious use of surrogate decision makers (such as family members) to give consent for enrolling such patients in a limited set of studies that either hold promise as potential therapies or advance our understanding of the disease from which they suffer. There would need to be safeguards—limits on such surrogate consent—but not an outright ban.

For example, patients with impaired cognition could not be enrolled as subjects in studies about other diseases from which they did not suffer, as this would treat them as mere means of benefiting others. There would also need to be stricter limits on the level of risk that surrogates could consent to permit their loved ones to undertake in such research compared with the risk that a patient with intact decisional capacity might be allowed to take on. Patient assent would be required even if they cannot actively consent (i.e., refusals by patients who are cognitively impaired ought to be respected).

And there needs to be a harmonization of the patchwork of regulations across jurisdictions in the US (and internationally) that set different and often conflicting standards for surrogate consent. We believe reasonable persons would agree to permit such a system, and to have such rules applied to them, were they anticipating the possibility that they might one day become cognitively impaired. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
16
 

Rohingyas battle population control

Somewhere between 6,000 and 20,000 Rohingya refugees from Myanmar are drifting in the Andaman Sea while neighbouring countries take turns to deny them entry.

“What we have now is a game of maritime Ping-Pong,” Joe Lowry, of the International Organization for Migration in Bangkok, told the New York Times. “It’s maritime Ping-Pong with human life. What’s the endgame? I don’t want to be too overdramatic, but if these people aren’t treated and brought to shore soon, we are going to have a boat full of corpses.”

Why are they fleeing? “It’s a combination of things,” says one observer. “Their lives have become worse and worse.”

One reason is probably old-fashioned population control. The parliament of Burma (officially known as the Union of Myanmar) recently passed a new “population control” bill that could represent a serious setback for the country’s maternal health advances if implemented in a coercive or discriminatory manner, according to Physicians for Human Rights (PHR).

The bill, which introduces the practice of “birth spacing” or a three-year interval for women between child births, is expected to be signed by President Thein Sein in the near future.

Although the bill seems designed to implement the Millennium Development Goals, which will expire in 2015, it could easily be used as a tool to oppress Myanmar’s ethnic minorities, especially the Muslim Rohingyas in the north.

Regional authorities will be able to impose population policies if population growth, accelerating birth rates, or rising infant or maternal mortality rates are negatively impacting regional development. According to The Irrawaddy newspaper, an “imbalance between population and resources, low socio-economic indicators and regional food insufficiency because of internal migration” are also reasons to invoke the law.

David Mathieson, of Human Rights Watch, told The Irrawaddy that “The worrying undercurrent of the law, especially stemming from the 2012 violence in Rakhine [Arakan] State and the dreadful government commission report that was produced, seems to be measures aimed at reducing the Muslim population count and the Rohingya population in particular.”

The Population Control Bill is one of four bills known as the “Race and Religion Protection Laws.” The other three would ban polygamy; create administrative hurdles to a spouse’s religious conversion; and require that couples in an interfaith relationship seek permission to marry from local authorities. They all seem aimed at the Rohingya minority.



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May
16
 

Israel evacuates babies of surrogate mothers from devastated Nepal

Nepal’s devastating earthquakes in recent weeks have brought to light its little-known surrogacy industry. Aboard an Boeing 747 repatriating Israeli citizens after the first quake on April 25 (in which an estimated 8,000 people died) were 15 babies born to surrogate mothers there. Eventually 26 babies arrived – and none of the mothers. Another 100 women pregnant with babies for Israeli clients remained behind.

After the May 12 quake, another four babies were evacuated.

In Israel surrogacy for homosexuals and single parents is illegal, so they have turned to surrogacy agencies abroad. India and Thailand had well-developed surrogate-mother networks. But after scandals both countries recently imposed onerous restrictions on overseas clients. So the Indian agencies have moved their clinics to Nepal. Surrogacy is against the law in Nepal, but this only applies to Nepalese citizens. So Indian women have been going to Kathmandu clinics to bear babies for Israeli clients.

An op-ed in the Israeli newspaper Haaretz by left-wing social activist Alon-Lee Green was scathing about how surrogate mothers were being treated.

“How can it be that none of the human interest stories or compassion-filled posts mentioned these women, who came from a difficult socioeconomic background, some from Nepal and some from other poverty-stricken areas of Asia just to rent their wombs (not sell their ova, since the fathers generally prefer European genetic material)? Who now, like the babies they’ve just had, are also stuck in the disaster zone?

“I know I may sound overly worked up about this issue, which is complex, painful, and touches our most personal and humane places as a society. But the attitude toward these women, or more accurately, the lack of one, in the midst of the earthquake story sheds light on exactly what’s problematic about surrogacy: The surrogate mothers have become a commodity, yet another product to be bought on the open market. Or to be more precise, these women, their wombs and their time have become commodities for Israeli men.”

Once the babies have arrived, they face further difficulties. Because their biological mothers are not Jewish (the ova were purchased from the US, South Africa and other countries) they need to undergo conversion. But most rabbinical courts are very reluctant to allow the children of single-sex couples or single parents to convert. 



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May
16
 

What’s so philosophical about bioethics?

The latest edition of the Cambridge Quarterly of Healthcare Ethics contains a stimulating series of articles on the nature and usefulness (or lack thereof) of philosophical bioethics.

The special section is the work of Nordic bioethicists Tuija Takala and Matti Häyry, who recently collected a series of essays representing different perspectives on the role of philosophy in bioethical enquiry. Takala and Häyry also offer their own opinions.

According to Hayry, genuinely philosophical work in bioethics eventually comes down to unearthing and exposing the assumptions and presuppositions that underlie our ideas and assertions about moral, social, and political realities.

“The soundness of arguments for and against real-life views and judgments depends on the correctness of their underlying theories… It is my conviction that [philosophers] can expose the presuppositions of these views and present them for all to see, in the hope that people can then make informed choices among alternative solutions.”

In the responses to the question “wither philosophical bioethics?”, contributors offer diverse perspectives, ranging from feminist and post-modern to pragmatic and egalitarian. In his “Toward a Postmodern Bioethics,” David Gibson discusses the importance of scepticism toward meta-narratives in theoretical bioethics:

“In seeking to question and disrupt accepted approaches and theories in healthcare, a postmodern approach attempts to acknowledge the limitations that healthcare practices impose on practitioners, while calling on theorists to take responsibility for their contributions.”

In “The Evolving Idea of Social Responsibility in Bioethics: A Welcome Trend”, Johanna Ahola-Launonen examines the extent to which individuals can be held answerable when it comes to the link between their choices and their health problems. She argues that we have an ethical imperative to discuss and address social factors that lead to poor health “There is an abundance of empirical evidence to support the significance of social determinants. Family wealth, social status, networks, and cultural knowledge of societal processes mold a child’s personality and her future prospects…”. One task of philosophical bioethics is to correct erroneous attributions of responsibility.

Taken as a whole, this Cambridge Quarterly series of essays provides a good overview of different perspectives in philosophical bioethics. It’s an informative summary of the status quaestionis.  



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
16
 

Brace yourself, humanity!

With rapid developments in artificial intelligence technology, academics and industry leaders are warning of the existential threat posed by autonomous AI systems. 

Cosmologist Stephen Hawking, Tesla CEO Elon Musk and Microsoft CEO Bill Gates have all recently cautioned against developing AI entities that have ‘interests that conflict with that of homo sapiens’.

At the 2015 Zeitgeist conference in London last week, Hawking warned that “Computers will overtake humans with AI at some within the next 100 years.” “When that happens, we need to make sure the computers have goals aligned with ours”, he said.

“Our future is a race between the growing power of technology and the wisdom with which we use it”, he added.

Elon Musk fears that the development of artificial intelligence, or AI, may be the biggest existential threat humanity faces. And in a Reddit Q and A session earlier this year, Bill Gates said he was “in the camp that is concerned about super intelligence”.

For these thinkers, it is crucial that we have adequate regulatory oversight of artificial intelligence companies. Hawking has called for increased transparency from artificial intelligence development firms, so that we can ensure that AI never grows beyond humanity’s control.

Many tech leaders are sceptical about the possibility of developing autonomous AI machines.

A lead article in the Economist this month assayed the topic of AI, the author arguing that “even if the prospect of what Mr Hawking calls “full” AI is still distant, it is prudent for societies to plan for how to cope.”

That edition of the Economist also featured a useful article summarising the state of the art in AI research. There have been significant advances in machine learning, face recognition software and autonomous weapons systems, the result of a recent boom in investment in AI firms. But the technology is still quite nascent, the authors admit. There is not, at least not yet, “a ghost in the machine”. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
16
 

Hands off my DNA!

A New Orleans man has accused police of an invasion of privacy after he was arrested in relation to a ‘cold’ homicide case.

Michael Usry Jr., a young filmmaker, was arrested by police last year based on supposed DNA links to the 1996 murder of a young woman. Police obtained the arrest warrant after conducting a ‘familial searching’ DNA test using data from a genealogy company, the Sorenson Molecular Genealogy Foundation.

Police were using genetic information from semen specimens found at the crime scene and then obtained a court order to access the Sorenson database.

The DNA search found that a sample from Usry’s father, Michael Sr., bore significant similarities to the specimen obtained at the crime scene. Following typical familial searching procedures, the police obtained information on all relatives of Ursy Sr., and narrowed down the list of potential suspects to his son.

Police claimed that Michael Jr’s dark films and ‘Facebook links’ to Idaho (where the crime took place) made him a prime suspect for the crime. “All of the circumstantial evidence was right,” claimed Sargent James Hoffman, of the Idaho Falls Police Department.

But Michael Jr. was not the man police were looking for. Following a DNA test, it was discovered that Ursy’s DNA did not match the semen from the crime scene.

Erin Murphy, a professor at the New York University School of Law who has written about familial searching, said Usry’s case is the first she has seen in which law enforcement used a publicly accessible database like Sorenson, as opposed to a private law enforcement database, to obtain an investigative lead.

“I think what we’re looking at is a series of totally reasonable steps by law enforcement,” Murphy said. “But it has this really Orwellian state feeling to it, and it is a huge indictment of private genetic testing companies and the degree to which people seamlessly share that information online.”



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
16
 

A donor or a father?

A Virginia man has been granted custody and visitation rights after changing his mind about the relationship he wanted with his genetic child. The man had supplied sperm to a friend seeking to have a child without a partner.

Robert Boardwine agreed In mid-2010 to provide sperm for his friend Joyce Bruce, who in turn impregnated herself using a turkey baster. Joyce wanted to raise the child on her own, and Boardwine agreed to this. By the time the child was born, however, Boardwine had changed his mind and wanted to be a part of the child’s life. Bruce refused, and the matter ended up in a Virginia appellate court. 

In their ruling, the three appellate judges found that Boardwine was entitled to custody and visitation rights, as the conception “did not result from artificial insemination or any intervening medical technology”. Commenting on the statutory terminology, the judges said that “the plain meaning of the term “medical technology” does not encompass a kitchen implement such as a turkey baster.”

The decision has prompted some bioethicists to call for a revision of gamete donor law.

“Since legal parenthood is a morally weighty designation that has an enormous impact on the wellbeing of many people, it should track the morally relevant facts as much as possible”, said Dr. Reuven Brandt, an ethicist at Lancaster University. “The type of equipment used and the involvement of licensed medical professionals seem irrelevant to the moral facts”, he said. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
16
 

A “revolution” in IVF technology?

A new IVF technique is being touted as the “next big thing” in fertility after it apparently contributed to the birth of a baby in Canada. Zain Rajani was born in April to 34-year-old Natasha Rajani, a woman with poor-quality eggs.

The new technique, developed by a Boston company, OvaScience, injects mitochondria from a woman’s own egg stem cells taken from the ovary into her eggs. This supposedly improves egg health by increasing the eggs’ energy levels for embryo development. “Mitochondria from egg precursors rejuvenate the egg to bring it back to a high quality state,” says Dr Jonathan Tilly, of Northeastern University, who developed the technique.

“We could be on the cusp of something incredibly important,” Dr Owen Davis, president of the American Society of Reproductive Medicine told Time magazine. “Something that is really going to pan out to be revolutionary.”

The technique, which OvaScience called “Augment” (see video here), is currently not available in the United States because it is deemed a kind of gene therapy, which is still being investigated by the Food and Drug Administration. Besides, as Time magazine points out, there have been no clinical trials: “A lack of regulation of most reproductive technologies … and the dominance of business-minded scientists has rushed new methods to clinics, often before their effectiveness has been fully proven.”

Bioethicist Art Caplan has urged caution. “You’re innovating in an area where the burden of a bad outcome goes on for a lifetime and the person bearing the highest cost can’t consent,” he told the Canadian Medical Association Journal. 



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May
16
 

Journal editor comes under fire

The Journal of Medical Ethics received some unwelcome publicity last week when one of its nine associate editors announced that she was “unfriending” Conservatives after they won a majority in last week’s British election.

Rebecca Roache, a lecturer at a lecturer at Royal Holloway, University of London, delivered a blistering attack on the Tories in a post on Oxford University's Practical Ethics blog.

One of the first things I did after seeing the depressing election news this morning was check to see which of my Facebook friends ‘like’ the pages of the Conservatives or David Cameron, and unfriend them. (Thankfully, none of my friends ‘like’ the UKIP page.) Life is too short, I thought, to hang out with people who hold abhorrent political views, even if it’s just online. … I’m tired of reasoned debate about politics—at least for a day or two. I don’t want to be friends with racists, sexists, or homophobes. And I don’t want to be friends with Conservatives either.

Rod Liddle, of the Spectator, called it an example of “the epic delusions, temper tantrums and hissy fits of the metro-left”. Jim Everett, an Oxford academic, who described himself as a “gay, disabled, working-class Conservative” was also critical. “This appears to justify that it’s OK [to hold] the idea that Conservatives are evil and therefore they are intellectually and morally inferior,” he wrote in a comment. “As an academic, I find that worrying. Across the Atlantic, the managing editor of Reason.com cited the post as an example of “hermetically sealed thinking inside academia”.

However, many comments and some students at Oxford were supportive. “I completely agree about de-friending Tories,” one told The Oxford Student, a publication of the Student Union. “I’ve removed a lot of them since Thursday night. They are fundamentally self-interested people and have no place in my life or my friendship circle.” 

The tempest may have been occasioned by a misunderstanding of how Facebook works. As one comment on Dr Roache’s post noted: “‘liking’ a Facebook page means absolutely zilch. ‘Liking’ a page allows you to get updates from that page. That is why I ‘like’ the pages of all parties running in any election – simply to get their news in my newsfeed.”



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May
12
 

Examining the last taboo

It’s hard to think of an activity with stronger moral taboos than paedophilia. Seeking sexual intimacy with children is popularly regarded as one of, if not the worst, possible crime. Other sexual activities, even bondage or bestiality, might even provoke ribald humour, but paedophilia is feared and loathed.

But a Norwegian bioethicist has just published a call to examine the ethics of paedophilia more coolly and rationally. “Pedophilia is bad only because, and only to the extent that, it causes harm to children, and that pedophilia itself, as well as pedophilic expressions and practices that do not cause harm to children, are morally all right,” contends  Ole Martin Moen in the latest issue of the Nordic Journal of Applied Ethics.

Let’s be clear about what his aims are. Dr Moen, who teaches at the University of Oslo, has not written a manifesto for paedophilia. But he does believe that society treats paedophiles with revulsion because of certain confusions and contractions which he endeavours to clarify.

Are paedophilic feelings wrong? No, he says. “Pedophiles do not choose their preferences, and that though their preferences might well be both unfortunate and pathological, the mere fact of having such preferences is neither moral nor immoral.”

Why is adult-child sex wrong? For two reasons, says Moen. First, because there is a high risk that it could be psychologically harmful. Second, because children are not capable of consenting to something that might harm them.

Can we blame paedophiles who act upon their impulses? Yes, but their guilt might be mitigated by ignorance or “moral bad luck”. “Pedophiles are unlucky to be pedophiles, and we should concede that for many of them, it must be very difficult to go through life without ever seeking sexual contact with a child. Why, we might ask, should we expect it to be easier for pedophiles to abstain completely from adult-child sex than it is for others to abstain completely from adult-adult sex?”

But what about paedophilic activity which does no harm to a child? Would there be anything wrong with that? Probably not, if we accept Moen’s analysis, but sexual activity with real children is far too risky. However, paedophilic pornography harms no one, so there is nothing wrong with it. In fact, “Granted our current knowledge, it therefore seems that texts and computer-generated graphics with pedophilic content may result in less adult-child sex.”

So, he concludes, “the enjoyment of fictional stories and computer-generated graphics with pedophilic content is, in and of itself, morally acceptable ... The production, distribution, and enjoyment of texts and computer-generated graphics with pedophilic content should almost certainly be made legal.”



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May
09
 

Drug giant appoints bioethicist to head compassionate use panel

In an effort to cope with controversies over “compassionate use” of experimental drugs, Johnson & Johnson has appointed America’s best-known bioethicist to head an independent panel to assess requests.

Art Caplan, of New York University School of Medicine, will head a company panel examining cases of desperately-ill patients who believe that a drug which has not been approved by the Food and Drug Administration will help them.

Dr Caplan compares the Johnson & Johnson panel to what the United Network for Organ Sharing (UNOS) has achieved with its allocation process. "We want to establish a model that will create a structured policy of allocation based on equality, need and efficacy to ensure that the utility of our scarce resources are maximized," he said. "If successful, [it] will serve as a model for others in industry and in government to follow."

In recent years, these requests have become more common. Patients and their families have applied pressure via social media to drug companies to give them access to experimental treatments. The drug companies are reluctant because the drugs are in short supply or unproven and possibly harmful. Some states have attempted to short-circuit the clinical trial process for these heart-rending cases by passing “right to try” laws.

It is estimated that the FDA granted about 1800 requests from drug companies to allow compassionate use in the 2014 fiscal year. It approved nearly all of them.

Compassionate use is an attempt to strike a balance between patient autonomy and informed consent. On the one hand, patients are making their own choices after being informed of the risks. On the other hand, they may be too sick or may not have the background to understand the risks. Often the odds of an experimental treatment working are as low as 10%. As a recent article in the New England Journal of Medicine pointed out, “it may well not be in the interest of patients, however sick they may be, to have easier access to products that are ineffective and may actually worsen their clinical status.”

Furthermore, by diverting resources from clinical trials, “compassionate use” could hold up the approval process and delay the moment when other patients can access the drug. Sometimes, as in the recent Ebola epidemic, the allocation of experimental drugs can affect whole populations and a country's foreign policy. Navigating these stormy waters is a job which requires not only medical knowledge but tact and adroit political skills. 



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May
09
 

Leading bioethicists back euthanasia for mentally ill

Many believe in euthanasia for the terminally ill. But why not legalize it for those suffering from an untreatable mental illness?

In the Journal of Medical Ethics, two influential bioethicists argue that we should allow euthanasia for patients suffering from ‘treatment-resistant’ depression. Udo Schuklenk, of Queens University in Canada, and Suzanne van de Vathorst, of the University of Amsterdam, claim it is discriminatory to allow euthanasia or assisted suicide for terminally ill patients but to deny it to those who suffer from incurable mental illness. Professor Schuklenk is co-editor of the journal Bioethics.

The authors see no relevant difference in the quality-of-life of patients in these situations:

“…Those who support acceding to assisted dying requests made by competent adults (and possibly mature minors) for irreversible conditions that render a patient’s life permanently not worth living to them have good reason to support the availability of assisted dying for competent patients suffering from TRD or other psychiatric disease…

Incurable disease conditions that are not terminal by most definitions can also render competent people’s lives not worth living in their own well-considered judgement.”

The authors describe the immense suffering endured by those who suffer from incurable depression, and quote a lengthy excerpt from an American psychiatrist and biopolar sufferer: “Suicidal depression involves a kind of pain and hopelessness that is impossible to describe.”

They conclude that legislative bodies should seriously consider revising their restrictions on the availability of euthanasia:

“We recommend that jurisdictions considering the decriminalisation of assisted dying do not limit access to such services to patients suffering from a however defined terminal illness.”

The article poses an interesting question, relevant to euthanasia advocates and opponents alike: Can one rationally advocate for euthanasia while opposing its provision for those suffering from an incurable mental illness?

Many believe the answer is ‘no’, and for this reason refuse to support campaigns to legalize assisted dying.

Canada’s recent Supreme Court ruling may have opened the door for assisted suicide for those suffering from serious mental illness. The Supreme Court judgement stipulates the following conditions for assisted dying:

"(1) the person affected clearly consents to the termination of life; and (2) the person has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition."


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
09
 

South African judge defends assisted suicide ruling

A South African judge has defended a ruling he made in favor of assisted suicide, claiming that appeals to ‘sanctity of life’ are irrelevant to end-of-life issues.

Judge Hans Fabricius rejected a request from the Department of Justice to rescind his controversial court order, asserting that individual rights need to be respected:

“The main argument [by the justice minister] was that the right to life was paramount and that life was sacrosanct. I agree with this general submission. The provision safeguards a person’s right vis-a-vis the state and society. It cannot mean that an individual is obliged to live, no matter what the quality of his life is.”

Lesego Montsho SC, representing the director of public prosecutions and the health and justice departments, asserted that the order should be rescinded as the applicant died before the judgement took place.

Judge Fabricius rejected this claim, and said a formal appeal must decide whether his ruling is moot. In his judgment, Fabricius rejected religious arguments against euthanasia, arguing that ‘individual rights’ are inviolable:

“The applicant‘s rights, which were sacrosanct to him, could not be sacrificed on the altar of religious self-righteousness.”

The Departments of Justice and Health are expected to appeal to South Africa’s Constitutional Court, which has the final say on cases concerning constitutional rights. 

“Doctors signed a Hippocratic oath which talks about life, life, and life. I won't give up to allow another arm of government to change the ethics and direction of doctors in the way that ruling is going to," said Minister of Health Aaron Motsoaledi.


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
09
 

British woman seeks to bear dead daughter’s child

In what could be a world first, a 59-year-old British woman is seeking to fertilize the frozen eggs of her deceased daughter with donor sperm and gestate her grandchild.

The eggs were extracted in 2008 after the woman, known only as Miss A, learned that she had bowel cancer and stored at IVF Hammersmith in west London. She was 28 and unmarried when she died in 2011.

The mother, known as Mrs M, and her 58-year-old husband claim that it was A’s dying wish that embryos be created with donor sperm and implanted in her mother. An IVF clinic in New York has agreed to the procedure at a cost of about US$90,000.  

The UK’s fertility regulator, the Human Fertilisation and Embryology Authority, has denied the couple’s request, saying that there is not enough evidence of the deceased woman’s consent.

Mrs M claims that her dying daughter told her: “I want you to carry my babies. I didn't go through the IVF to save my eggs for nothing. I want you and dad to bring them up. They will be safe with you. I couldn't have asked for better parents, I couldn't have done this without you.” A was an only daughter, so this will be the couple’s only chance to have grandchildren.



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May
09
 

Transhumanist launches campaign for US President

from Gizmodo

Transhumanism is a broad church embracing many different approaches. But it has enough followers to prompt Zoltan Istvan, founder of the Transhumanist Party, to run for President in America’s 2016 elections. He is even planning a bus tour this coming summer. The popular website Gizmodo interviewed him about his convictions and his platform.

It’s no longer a fringe movement: “The Transhumanist Party may seem fringe to some, but it’s not. It’s mainly made up of scientists, engineers, futurists, and people who love technology. And while we don’t have a formal paying membership process, my officers and I estimate—based on social media, event turnouts, and donations—we now have about 25,000 supporters in the US. We also have approximately 40 volunteers and more signing up every week. Globally, there are now almost 25 Transhumanist Parties on five different continents, each with its own rules that it determines best within its national framework.”

The key issue is life, or, rather, not dying. “The whole experience of life is crazy and beautiful and precious. We need to protect and preserve that life, at all costs. The only rational way one can do that is with technology and science, which is exactly the principle the Transhumanist Party was formed upon. Transhumanists are a people defined specifically by their love of life…  Most Americans just don’t care about the goals of transhumanism. Many subscribe to what I call a “deathist” culture, where they insist we must follow the rules of the Bible, die, and go to heaven to meet Jesus.”

The vision for the future: “we are hoping to change the world and usher in an age where science, technology, and the right to do with your body what you want are not at odds with American culture.”

Where are the votes? “My 2016 campaign strategy is to target three specific groups: atheists, LGBT people, and the disabled community. Collectively, they number about around 30 million Americans, and some of them are already present in large numbers in the transhumanist community and share similar values. I want to reach supporters of science and technology, and the main philosophical premise of morphological freedom—that you have the right to do with your body whatever you want so long as it doesn’t hurt someone else.”



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May
09
 

Companies fight for market space inside your head

There has been a dramatic rise in the number of brain-technology patents in the US, with companies furiously researching the potential of new neuroscientific developments to revolutionise industries and influence consumer behaviour.

In 2014 1,600 neuro-technology patents were lodged in the US, up by 400% from 2009.

Fewer than 400 so-called neuro-technology patents a year had been filed between 2000 and 2009, research company SharpBrains report. But that had doubled to 800 in 2010. The 2015 figures are expected to be the highest yet.

‘Neuro-technologies’ are developments that allow one to monitor and affect brain activity and functioning. These new technologies range from strictly medical innovations to inventions that could revolutionise education, marketing and even computer-gaming.

There has been a dramatic rise in the number of companies such as Thync, a start-up working to connect to the brain sensors that can alter mood in the same way as a coffee or energy drink.

There are moves afoot to come up with ways of controlling video games via brainwaves - such as a collaboration between EEG headset-maker Emotiv and the Institute of Electrical and Electronics Engineers (IEEE).

Information and measurement company Nielsen has taken out 100 neuro-technology patents, including patents of devices that monitoring cognitive responses to new products and advertising. 

The expansion into non-medical uses represented a dawn of the "pervasive neuro-technology age", said SharpBrains chief executive Alvaro Fernandez.

"Neuro-tech has gone well beyond medicine, with non-medical corporations, often under the radar, developing neuro-technologies to enhance work and life," he added.

Matt Wall, of the Centre for Imaging Science, at Hammersmith Hospital, is more circumspect:

“There probably are some decent companies doing work in that space, but there are a massive number of neuro-marketing companies that have sprung up in the last few years…

“Because of the wide availability and low-cost of the EEG hardware these days, they all seek to define their [unique selling point] and intellectual property (ie patents) based on their fancy analysis techniques and claim to measure things like 'engagement' or 'interest' from EEG signals…Any EEG researcher knows this is absolute rubbish”. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
09
 

Training more empathetic doctors

Patients often complain that freshly-minted doctors lack empathy. But what’s the solution?

A recent comment in the New England Journal of Medicine considers this question, and offers some novel suggestions. 

Dr. Richard M. Schwartzstein of Harvard Medical School doubts that the dearth in empathic graduates is  simply the result of lax admissions criteria in med schools:

 “I believe that the causes of current problems in doctor–patient interactions are more complicated than this… we should question the assumption that we’re admitting the wrong students — and consider alternative solutions…”

Schwartzstein argues there are systemic problems in the way universities teach medicine:

“Typically, students enter medical school idealistic, eager to improve the human condition, and excited about becoming doctors. And then we do various things to change them. We have them memorize long lists of facts (or at least they perceive that as our goal), delay their involvement with patients, and expose them to frustrated and overwhelmed faculty members who are under increasing pressure to generate greater clinical revenue. And students’ empathy diminishes.”

He proposes a number of bold solutions that he believes will improve interactions between doctors and patients.

“First, we can explicitly celebrate and support the idealism, kindness, and patient focus with which students enter medical school… Second, we can ensure that the clinical faculty who supervise our students are selected for, and trained to enhance, their ability to support rather than undermine these values…

“Third, we can continue to refine objective measures and instruments that enable faculty to assess interpersonal skills, provide faculty development to ensure these assessments are completed, and prohibit students deficient in the skills necessary for patient-centered care from advancing in their training…”

Schwartzstein’s suggestions may sound nebulous, but they seem to resonate with the experience of young medical students.

Ilana Yurkiewicz, a fourth year student in Harvard Medical School, recently lamented a loss of empathy and creativity among students in hospital wards:

“As a third and fourth-year medical student, I sometimes felt like a dolt on the wards… the most negative experiences for me weren’t the result of any particular individual, but a culture that treated me in certain ways – that set certain expectations for who a medical student was and how she should be treated, and then acted to mold me toward those expectations…”

Like Schwartzstein, Yurkiewicz suggests a change in approach among medical professionals charged with forming the next generation of doctors:

“I want our patients to be at the center of everything we do. I want an environment where people feel comfortable being themselves and are free to ask questions, have emotions, and disagree with those more experienced. I want the focus to be on education over evaluation.”


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
08
 

“Professor, do your homework,” disability group tells Singer

Utilitarian bioethicist Peter Singer has often come under fire for his views on infanticide from pro-life groups. But after a recent radio interview, he was sternly rebuked by a US government agency, the National Council on Disability.

Professor Singer was promoting his book, The Most Good You Can Do: How Effective Altruism Is Changing Ideas About Living Ethically, on Aaron Klein Investigative Radio, a show broadcast in New York and Philadelphia.

Klein elicited from Singer the claim that government-funded health care should include rationing and that we should acknowledge the necessity of “intentionally ending the lives of severely disabled infants.”

This, says the NCD, is “a return to eugenics”.

Singer went on to say, “I don’t want my health insurance premiums to be higher so that infants who can experience zero quality of life can have expensive treatments.”

Should severely disabled infants be killed to reduce health-care costs? Singer did not respond directly, but he said that caring for them should not necessarily be covered by a national health service.

[If] “you had a health-care system in which governments were trying to say, ‘Look, there are some things that don’t provide enough benefits given the costs of those treatments. And if we didn’t do them we would be able to do a lot more good for other people who have better prospects,’ then yes, I think it would be reasonable for governments to say, ‘This treatment is not going to be provided on the national health service if it’s a country with a national health service. Or in the United States on Medicare or Medicaid.’”

This outraged the NDC.

In contrast to Singer’s ivory tower speculations, the United States Supreme Court has acknowledged that "society's accumulated myths and fears about disability are as handicapping as are the physical limitations that flow from actual impairment." … Though it might surprise Singer and those with limited imaginations, even people with disabilities who encounter obstacles, prejudice, and discrimination, derive satisfaction and pleasure from their lives…

NCD categorically rejects any calculus that assumes to ascribe a measurable, immutable quality of life to another human being – disabled or not. There are simply too many variables to consider in making “quality of life” assumptions. Such conjecture should be left in the classroom alongside brainteasers about moving trains and traveling at the speed of light.

The NDC concludes, “In short, we offer this simple but indispensable advice: “Professor, do your homework.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
08
 

Outsourcing embryos in India

A recent Vice documentary for HBO, Outsourcing Embryos, explored the well-trodden path to shady surrogacy practices in India. Proposed legislation has languished in a Parliamentary committee since 2010 so there is little effective regulation. Investigative journalist Gianna Toboni described what she found in an interview with New York Magazine.

She says that American clients are often unaware of exploitative practices:

There are cases where American couples feel a little strange about what is happening, and the ethics of it, but turn a blind eye because they don’t want to pay the higher rates in the States. Many couples don’t want to know what’s behind the scenes, they want their baby fast, and they want it done cheaply. At the same time, there are couples who have an ongoing relationship with the surrogate and are very involved in making sure she’s making a choice and not simply being exploited.

Although a broker offered to sell her a baby over lunch when she posed as a woman desperate for a child, Ms Toboni did not actually witness sub-standard medical treatment. However, the picture she paints is desolate:

At the same time, there’s no limit to how many embryos can be implanted. Doctors have been known to insert more than one or two embryos to increase the chances that the woman will get pregnant without losing time or money. The commissioning couple may only want one baby, so sometimes, when more than one baby is born, the couple isn’t told, even though it’s their genetic offspring. As you can see in the documentary, I was offered one of these babies from the black market.

There are rumours of orphanages with “white” children for sale, the surplus production of surrogate mothers who had twins. 



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May
02
 

Nita Farahany: Neuroscience and the law

 

The US Presidential Commission for the Study of Bioethical Issues recently released the second volume of its two-part report Grey Matters. The report considered ethical issues attendant to the rapid development of neuroscience, and the second volume had a particular focus on the ethical implications of neuroscience research.  

One of the authors of the report was Duke University Professor Nita Farahany. Professor Farahany is leading scholar on the ethical, legal, and social implications of biosciences and emerging technologies, particularly those related to neuroscience.

In an exclusive interview with BioEdge, Professor Farahany shared her thoughts on the complex relationship between neuroscience and the law.

****** 

Xavier Symons: According to your own study of US legal proceedings, over 5 percent of murder trials and 25 percent of death penalty trials feature criminal defendants using neuroscience to argue for lesser responsibility or punishment. Do you think neuroscientific evidence is being ‘overused’?

Nita Farahany: Many methodological hurdles remain in neurological studies of complex behavioral traits. For example, what does “impulsivity” mean? How is it measured? Despite these scientific hurdles, the use of neurological evidence in the criminal courtroom is on the rise. I don’t think it’s quite right to say it’s being “overused.” Rather, I think in some instances, it’s being used before the science can tell us much about the behaviors or reasons for actions pertinent to a criminal case.

"it is so important to deliberate about the ethical and legal questions raised by the use of neuroscience in the legal setting already, before its use becomes more mainstream."

 

Much of the neuroscience cited in the neurolaw and neuroethics literature is still quite nascent. Sometimes the literature deals with technologies that are still science fiction. Do you consider neurolaw to be a primarily ‘forward-looking’ area of legal research? 

Although laboratory studies demonstrate varied potential applications of neuroscience discoveries to the legal setting, many of these discoveries are not ready for use in the courtroom. For example, some argue that neuroscience might eventually allow us to be able to interrogate the brain to reveal our unspoken thoughts or visual imagery in the brain, thereby threatening a deeply held sense of privacy. But today, and in the foreseeable future, neuroscience does not enable us to do so.

Law and neuroscience does have forward-looking aspects to it, which is why it is so important to deliberate about the ethical and legal questions raised by the use of neuroscience in the legal setting already, before its use becomes more mainstream. Some of the forward-looking questions that we should be deliberating about now are whether individuals have a legal interest to mental privacy that could safeguard against compelled to submit to EEG, fMRI, or other brain-based interrogations? What role could or should neuroscience play in helping to validate eyewitness memory? Should we as a society protect freedom of thought? Does neuroscience challenge any of our existing norms upon which legal and constitutional doctrines are built? As scientific research in neuroscience proceeds, we as a society should deliberate about these issues to ensure that the ethical and societal implications of neuroscience are considered alongside scientific developments.

 

Neuroscience is already very sophisticated, and the science is rapidly evolving. Do we really have a chance of adequately educating judges to grapple with the nuances of neuroscientific evidence?

Public education efforts can inform the public and help individuals better understand and interpret scientific claims; these efforts should be responsive to developments in the rapidly changing field of neuroscience.

Already, there are a number of successful efforts to train lawyers and judges about developments in neuroscience. For example, the American Association for the Advancement of Science (AAAS) and the Dana Alliance host seminars to educate judges on advances in neuroscience and the issues they might encounter as a result of neuroscience developments. Judges who have attended these seminars have gained the tools necessary to understand the basics about neuroscience being introduced into the legal system, and more importantly, where to learn more about neuroscience as it develops and when it appears in their courtrooms.

“sometimes neuroscience cannot answer the kinds of questions that it is presented to answer.” 

 

In your own research, have you found that lawyers and judges often take neuroscience out of context?

Neuroscience, just like other scientific evidence, can bring empirical evidence to inform legal rules and norms. But legal norms and the kinds of questions we ask in law require more than just scientific information – they build upon ethical and social justifications. What I have found is that sometimes, neuroscience cannot answer the kinds of questions that it is presented to answer. For example, to determine whether a criminal defendant is guilty of a crime, the prosecution must prove the defendant voluntarily acted with a certain kind of mental state when doing the alleged illegal act. A brain image or neuropsychological testing after a defendant committed a crime cannot tell us what the defendant’s mental state was at the time he acted illegally. Nor does knowing that an adolescent has a developing brain tell us whether adolescents as a group are less rational, or less morally culpable. These are unavoidably societal questions that neuroscience may inform, but do not alone answer.

And oftentimes, some of the practical limitations of current neuroscience research make it less applicable to law. Current neuroimaging studies, for example, often have very few participants, drawn from undergraduate student populations—a sample that does not necessarily represent either the population at large or the defendants to whom the studies are intended to apply. And studies about variations between groups of individuals may tell us very little about why any individual criminal defendant acted the way they did.

"When legislators rely on hyped scientific claims and unverified science to support political agendas, resulting policies and laws can be unjust."

 

How would you suggest policy makers address problems surrounding ‘hype’ and the overstatement of new neuroscientific findings? 

The role of neuroscience to answer legal and normative questions is often exaggerated and hyped. This hype can lead to unwarranted and excessive influence on legal decision makers like judges and jurors. Scientific hype in the media or scientific claims that have not been borne out through replication and verified by the scientific community at large can distort public perception. When legislators rely on hyped scientific claims and unverified science to support political agendas, resulting policies and laws can be unjust. Thus, neuroscientists, legal decision makers, and scholars must address the tension between advocating the use of neuroscience to improve accuracy and advance justice and prematurely urging its use, potentially hindering justice.

The responsibility to avoid hype is shared by many stakeholders, including neuroscientists, members of the media, politicians, judges, and the general public. Public education to improve understanding of neuroscience specifically and scientific evidence more generally is essential to enhance stakeholders’ understanding of neuroscientific concepts and the limitations of neuroscience within the legal system, and to reduce the potentially negative effects of hype.

Academic institutions, neuroscience and ethics professional organizations, and science policy organizations can play a role in increasing responsible engagement of neuroscientists with legal decision-making processes and policy development. They can offer educational materials and training resources that describe opportunities for engagement, help neuroscientists understand legal applications for their work, and develop communication skills to bridge language and methodological gaps between the two fields.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
02
 

Scotland’s assisted suicide bill whacked by committee

A bill which would legalise assisted suicide in Scotland contains “significant flaws”, according to a report by a parliamentary committee. Although most of the committee opposes the principle of the bill, they have decided to allow it to pass to the whole Scottish Parliament for a final decision.

The bill was introduced by former MSP Margo MacDonald, a doughty campaigner for assisted suicide. She died in April 2014, but the bill was taken forward by another MSP.

The language of the committee’s report is restrained but tough.

Compassion: “there are other ways of showing solidarity and compassion with those suffering distress, short of helping them to commit suicide.”

Respect for autonomy: “the principle of respect for autonomy is a qualified principle which is usually limited by the rights of others, by public safety considerations, and by the need to consider other principles and values.”

Withdrawal of life-saving treatment: “there are, therefore, a number of relevant legal and ethical differences between assisted suicide on the one hand and the refusal of life-sustaining treatment on the other. The fact that the law accepts the latter need have no bearing on the attitude it adopts toward the former.”

Terminology: “the Bill does not distinguish adequately between ―assisted suicide and ―euthanasia. The Committee appreciates that, for some, this gives rise to concern that because it does not define either term, the Bill does not specify precisely which actions it intends to shield from liability.”

Terminal, life-shortening and unacceptable: “the Bill’s failure to define these key terms leaves far too many people potentially eligible to receive assistance.”

Uncertainty: “the language of the Bill would introduce much uncertainty. In the context of a statute that makes an exception to the law of homicide and permits one person to assist in the death of another, such significant uncertainty must be unacceptable.”

Coercion: “there is no way to guarantee the absence of coercion in the context of assisted suicide.”

Suicide prevention: “There appears to be a contradiction between a policy objective of preventing suicide, on the one hand, and on the other, legislation which would provide for some suicides to be assisted and facilitated.” 



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May
02
 

South African court authorises assisted suicide

On Thursday a South African court ruled that a 65-year-old man should be allowed to undergo assisted suicide, setting a precedent that could influence broader law reform in the country.

The case involved Pretorian man Robin Stransham-Ford, a retired barrister, who was diagnosed with terminal prostate cancer in 2013. Pretorian High Court Judge Hans Fabricius ruled that Stransham-Ford’s doctor be immune from prosecution when assisting him to die. Stransham-Ford died the shortly after the court order was issued.

Judge Fabricius noted that is currently no law prohibiting assisted suicide in the country; he argued that he was legally obliged to rule on the case and the man’s rights.

Dignity SA, a pro-euthanasia lobby group, say the ruling is potentially a watershed moment in their push to legalise assisted suicide and euthanasia:  “We hope that Mr Stransham-Ford's case will set a precedent for the whole country”, said Sean Davidson, the founder of the group.

The South African ministers of health and justice, the Health Professions Council of South Africa and the National Director of Public Prosecutions opposed the case, as did Doctors for Life and an NGO Cause for Justice, who were heard as friends of the court.

Judge Fabricius tried to play down the significance of his decision, saying that future cases would need to be debated on their merits: “It is not correct to say from now on it will be a free-for-all.”

But National Prosecuting Authority (NPA) spokesman Mthunzi Mhaga said the ruling was "precedent-setting" and had "far-reaching implications" from a health and constitutional point of view. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
02
 

Death penalty losing support in US

As the US Supreme Court prepares to hear evidence on botched executions in Oklahoma, the Pew Research Centre has released revealing new statistics on opinions about the death penalty in the US. 

The study, which compared current views on the death penalty to studies conducted in previous decades, found that support for the practice has dropped dramatically over the past twenty years. Researchers found that 56% of Americans are currently in favour of the death penalty, compared to 78% in 1996. In the past four years alone, the share supporting the death penalty has declined six percentage points (from 62% in 2011).

Much of the decline in support over the past two decades has come among Democrat voters. Currently, just 40% of Democrats favour the death penalty, while 56% are opposed. In 1996, Democrats favoured capital punishment by a wide margin (71% to 25%).

The study, conducted Mar. 25-29 among 1,500 adults in the US, found that the majority of Americans are concerned about the possibility that an innocent person could be executed; a majority also believe that minorities are more likely than whites to be sentenced to death.

The results echo the sentiments of US Attorney General Eric H. Holder Jr., who opposes the death penalty due to the risk of someone being executed in error.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
02
 

Naturalism, but not as you know it

It’s surprising when you encounter an ethical framework radically opposed to the utilitarianism predominant in bioethics. Here’s one example: the anti-synthetic biology lobby group Friends of the Earth.

In a curious neo-romantic return to nature, Friends of the Earth inveigh against the whole field of synthetic biology, seeing it as an attack on the fundamental building blocks of reality – DNA. The group recently hosted a conference discussing the “the false premise of synbio” and its potential to undermine traditional knowledge, livelihoods and community.

As Hasting Center researcher Gregory E. Kaebnick observes, Friends of the Earth believe that life is a sacred, “right down to the cellular level”:

“The thought underlying this view is that the DNA contains, in a kind of code, the essence of an organism; it is the DNA that makes a living thing the thing it is. By altering the DNA, we necessarily and immediately make a living thing synthetic, which is to say unnatural. The departure from what is good and acceptable is manifested by an inherent dangerousness”.

Several speakers at the recent conference suggested that modified DNA are somewhat like radioactive atoms: danger infiltrates them, and they infiltrate, and ruin, the natural world. The overarching claim was that genetic modification of an organism is by definition a harm to nature; nigh the most fundamental harm to nature possible.

Kaebnick is sceptical about the extremes to which Friends of the Earth take the ‘sacredness of life’ ethic: “An across-the-board opposition to genetic modification tends to put a somewhat strained emphasis on the value of DNA.”

Indeed, most of our readers will be no doubt sceptical.

But the idea isn’t just an eco-manic flight of fancy. Kaebnick himself, a well-known figure in environmental ethics, has published a book arguing that goal of protecting life and preserving nature is a “good moral starting point.” Governments should work to promote a ‘respect for nature’ by taking a cautious approach to disciplines like synthetic biology. Kaebnick does, however, describe his position as more of an ideal than a matter of obligation. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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May
02
 

Life imitates art in Hollywood once again

The technical term for Hollywood’s latest bioethical brain-teaser is anti-mimesis, the theory that life imitates art. Sophia Vergara, the Colombian-American starlet who stars in Modern Family, a popular TV show which depicts the kaleidoscopic formations of contemporary families (at least families in southern California), has become embroiled in a dispute over embryos. Her tangled relationship could end up as a script for her own show.

Surrogacy, sperm donation, and IVF agony have become grist for the mill of the glossies, but Ms Vergara’s tribulations reached as far as the op-ed page of the New York Times this week.

With her former fiancé, Nick Loeb, the scion of a New York banking family, an actor, a failed politician, and successful businessman, she created two female embryos for a surrogate, as she (allegedly) did not want to bear the children herself. Under a contract that they signed, the embryos could only be implanted if both parties agreed.

That happened in 2013. Then the couple split up. In 2014 Mr Loeb applied to void the contract so that he could proceed with a surrogate pregnancy. Ms Vergara refused. Mr Loeb called in the lawyers and explained his side of the story in the New York Times:

“When we create embryos for the purpose of life, should we not define them as life, rather than as property? Does one person’s desire to avoid biological parenthood (free of any legal obligations) outweigh another’s religious beliefs in the sanctity of life and desire to be a parent? A woman is entitled to bring a pregnancy to term even if the man objects. Shouldn’t a man who is willing to take on all parental responsibilities be similarly entitled to bring his embryos to term even if the woman objects?”

Mr Loeb is Jewish by background and Episcopalian by denomination, not Catholic. But he says that he has a great deal of sympathy for Catholic views on the humanity of embryos. He wants his embryos to be born. Ms Vergara (who is Catholic) wants them to remain frozen forever.

"Vergara, who has happily moved on with her life, is content to leave the embryos frozen indefinitely as she has no desire to have children with her ex, which should be understandable given the circumstances," her lawyers say.

In Loeb’s view, “keeping them frozen forever is tantamount to killing them.” He says, “I take the responsibility and obligation of being a parent very seriously. This is not just about saving lives; it is also about being pro-parent.”

The battle continues.



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May
02
 

Germline tinkering sparks more controversy

Chinese attempts to modify the human genome using new gene editing technology are still stirring the pot of ethical controversy. The director of the US National Institutes of Health, Francis S. Collins, declared forthrightly this week that the NIH would not fund such research.

“The concept of altering the human germline in embryos for clinical purposes has been debated over many years from many different perspectives, and has been viewed almost universally as a line that should not be crossed. Advances in technology have given us an elegant new way of carrying out genome editing, but the strong arguments against engaging in this activity remain. These include the serious and unquantifiable safety issues, ethical issues presented by altering the germline in a way that affects the next generation without their consent, and a current lack of compelling medical applications justifying the use of CRISPR/Cas9 in embryos. [As well], Practically, there are multiple existing legislative and regulatory prohibitions against this kind of work.”

Critics of the controversial experiments in which scientists tried to correct a defect in a single-cell embryo’s DNA believe that the technology will be used for genetic engineering and ultimately, human enhancement. Nature and Science refused to publish the research, despite its show-stopping potential.

Oxford bioethicist Julian Savulescu, the editor of the Journal of Medical Ethics, agrees that it will be used for genetic engineering – but he denounces the denunciation as immoral. In his eyes, it opens the door to curing serious genetic diseases.

“Gene editing is a revolutionary technology, which potentially offers the next generation an enormous range of benefits. It is important that bad arguments, empty rhetoric and personal interests do not cloud rational thinking and deny the next generation the enormous benefits potentially on offer from this type of research…

“Far from being wrong, the research by Huang and colleagues is ethically imperative… Imagine that I am a scientist. I have a promising candidate treatment that could save the lives of a million people per year. I decide not to continue the research. I am responsible for the deaths of those million people if my research would have led to a cure.

“One is left with the suspicion that religious reasons are behind the ‘ethical’ justifications for not accepting this research. And scientists must be terrified by a Christian fundamentalist backlash against their research if they are connected in anyway with research on human embryos. This could be detrimental to their funding and their commercial interests in developments using CRISPR that don’t involve embryos.”



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May
02
 

Keystroke: the world of the medical thriller

It could be that the public gleans most of its knowledge of bioethical issues from two sources: the news and from medical thrillers. In fact, medical thrillers have become a genre all of their own, according to an article in the Journal of Medical Humanities. Jean-Pierre Charpy, of the Dijon School of Medicine, in France, says that they are “a grid that could help future healthcare professionals understand discursive, procedural and socio-cultural aspects of the multifaceted world of medicine”.

Dr Charpy’s interest is educating non-English speakers in medical English, but his article is also a useful reading list. First of all, he notes that nearly all medical thrillers are written by Americans. A forerunner was Frank G. Slaughter, a physician-turned-novelist who wrote in the 1940s about advances in technology.

The first to write popular fiction which blended the world of medicine with the conventions of best-selling thrillers was Michael Crichton, who wrote A Case of Need and The Terminal Man while he was a student at Harvard Medical School.  “It is most probably the fertile breeding ground of New England and its prestigious medical schools that contributed to the birth of the medical thriller specialized genre in the 1970s,” writes Charpy, as Crichton’s successors, Robin Cook and Michael Palmer both trained at Massachusetts General Hospital in Boston.

Cook* is often regarded as the creator of the medical thriller. His novels have explored issues such as organ donation, genetic engineering, IVF, an Ebola pandemic, medical malpractice, medical tourism, drug research, and organ transplantation. “I joke that if my books stop selling, I can always fall back on brain surgery," he says.

Michael Palmer, who died in 2013, wrote 20 medical thrillers. His first, The Sisterhood, was about a secret society of nurses who euthanase their patients. Another early novel, Extreme Measures, was made into a film starring (bizarrely) Hugh Grant. He began writing as therapy while his medical registration was suspended because of his drug and alcohol addiction, an experience which helped his fiction.

Nowadays the medical thriller, combining suspense, medical facts, and technical and ethical issues, is a crowded field. Leah R. Robinson, Don Donaldson, Gary Braver, Leonard S. Goldberg, Peter Clement, David Shobin, and Gary A. Birken are some of the best-known authors.

One of the contemporary leaders is Tess Gerritsen, author of Harvest, a best-seller about children kidnapped for their organs. This was followed by Life Support, Bloodstream, and Gravity. (One of the characteristics of the genre seems to be a penchant for one-word titles, which could limit the genre to the finite number of nouns in a medical dictionary.)

One author who is not covered in Charpy’s article is possibly the only bioethicist to write best-sellers, Alexander McCall Smith, author of The No. 1 Ladies’ Detective Agency and dozens of other novels, as well as weighty textbooks. However, bioethics does not been to kindle his creativity, as most of fiction are detective novels.

* Not a relative of the editor of BioEdge. Alas. 



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April
25
 

China ignites debate over genetic engineering

Chinese scientists have been editing the genome of human embryos, a world first which has set off an debate over genetic engineering.

A team led by Junjiu Huang, a gene-function researcher at Sun Yat-sen University in Guangzhou, published its results recently in an on-line journal, Protein & Cell. Their aim was to modify the gene for β-thalassaemia, a potentially lethal blood disorder, with a gene-editing technique known as CRISPR/Cas9. They used non-viable human embryos from IVF clinics. The idea was to eliminate the gene in a one-cell embryo so that it would develop into a child who would not suffer the disease.

From a technical point of view, the results were disappointing and Huang said that the technique is not currently suitable for medical use. The reseachers injected 86 embryos and examined them after 48 hours when they had grown to 8 cells. Of these, 71 survived, 54 were analysed. Only 28 had successfully spliced the target gene, but only a fraction of these contained the correct replacement gene. They also found that there were a number of “off-target” mutations somehow caused by CRISPR/Cas9.

 “If you want to do it in normal embryos, you need to be close to 100%,” Huang told Nature News. “That’s why we stopped. We still think it’s too immature.”

What about the ethics of the technique? Since changes to the embryo genome are heritable, they will be passed on to the next generation. This opens the door to the controversial issues of designer babies and human enhancement.

Some observers were highly critical. “No researcher has the moral warrant to flout the globally widespread policy agreement against altering the human germline,” Marcy Darnovsky, executive director of the non-profit Centre for Genetics and Society in Berkeley, California.

In an editorial in Nature in March, when Huang’s research was only a rumour, several scientists published a call for a moratorium on experiments like theirs:

“In our view, genome editing in human embryos using current technologies could have unpredictable effects on future generations. This makes it dangerous and ethically unacceptable. Such research could be exploited for non-therapeutic modifications. We are concerned that a public outcry about such an ethical breach could hinder a promising area of therapeutic development, namely making genetic changes that cannot be inherited.

“At this early stage, scientists should agree not to modify the DNA of human reproductive cells. Should a truly compelling case ever arise for the therapeutic benefit of germ­line modification, we encourage an open discussion around the appropriate course of action.”

In Britain, it was hard to find scientists who were opposed, let alone alarmed, by the news. “It’s no worse than what happens in IVF all the time, which is that non-viable embryos are discarded," says John Harris, a utilitarian bioethicist at the University of Manchester, UK. “I don’t see any justification for a moratorium on research." 

One of the UK’s leading stem cell researchers, Robin Lovell-Badge, was almost enthusiastic. “I disagree with a moratorium, which is in any case unlikely to work well,” he said. “Indeed I am fully supportive of research being carried out on early human embryos in vitro [in culture/in the lab], especially on embryos that are not required for reproduction and would otherwise be discarded.”

And Dr Anna Smajdor, a bioethicist at the University of East Anglia, said: “There is a whiff of hypocrisy about the moral outrage over reports that Chinese scientists have been modifying the DNA of embryos. Here in the UK we have given the go ahead to modifying the DNA of babies who will transmit these changes indefinitely to their offspring. The Chinese have tweaked DNA in embryos never destined to be born.”

In any case, it seems more than likely that this research will continue in China. CRISPRs have become a standard tool in laboratories around the world and the potential for interesting research is enormous. According to Nature, at least four groups are working on genetic engineering of human embryos in China. 



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April
25
 

Keeping ahead of the game

A 30-year-old Russian IT worker with a crippling muscle-wasting disease could become the first person ever to get a body transplant. Valery Spiridonov, from the city of Vladimir near Moscow, says that he is so crippled that he has no other option.

"Am I afraid? Of course, I am. But this is not only scary, but also very exciting," Spiridonov told the Daily Mail. He is putting his trust in an Italian neuroscientist, Sergio Carnavero, who has been talking this procedure up for several years, and who has even given a TED talk about it.

Dr Canavero calls the operation HEAVEN, an acronym for head anastomosis venture. (Anastomosis is the surgical connecting of two parts.) He estimates that it would take a team of surgeons 36 hours and would cost US$11.5 million.

Theoretically, a head transplant may be possible. As early as 1908 an American surgeon grafted a head onto a dog, creating the first two-headed dog. In 1970, neurosurgeon Robert J. White transplanted a monkey’s head with some success, as the monkey was able to see, smell, taste and hear, although the spinal cord was not fused. The animal died after eight days because the body rejected the head.

Dr Canavero still has not examined his volunteer, although they have communicated on Skype. He is enthusiastic, telling the Daily Mail:

“I consider it to be as ethical as the transplant of the heart or kidneys. At some point of time this was considered to be unethical as well. There was much talk about where the human soul is located, and if it's ethical to do the heart transplants, but now doctors do it and save people's lives. I think it's the normal way of technology to evolve. It would be strange to stop at this point when the neurosurgery is ready to take the next step.

“The bodies used for transplant could be those of people whose brain was damaged, let's say in a car crash or motorbike accident, or who are sentenced to capital punishment. But, of course, in future humanity should learn how to grow healthy bodies for the transplants so there will be no shortage of organs and bodies.”

Bioethicist Art Caplan, of Langone Medical Center, at New York University, produced a laundry list of potential problems for CNN: poisoning the body with powerful immunosuppressant drugs, identity problems, and spinal fusion problems. In short, he says, the project is “nuts”.



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April
25
 

Donor dad not the genius he said he was

A lesbian couple is suing one of America’s leading sperm banks for misleading them about the superior qualifications of their sperm donor. Angela Collins and Margaret Elizabeth Hanson chose Donor 9623 at Xytex’s Atlanta sperm bank because he had an IQ of 160, an undergraduate degree in neuroscience, a Master’s in artificial intelligence, and an impressive health history. His prospectus also said that he was working on a PhD in neuroscience engineering.

The sperm donor’s identity was supposed to be confidential, but Xytex inadvertently revealed his name to the couple. To their dismay they discovered that their  donor had dropped out of college, was a schizophrenic, and had been arrested for burglary. A large mole on his cheek had been Photoshopped off his photo. It appears that 60 babies have been born from his sperm.

Xytex’s president says that the donor’s features "do not reflect the representations provided to Xytex". It appears that the information he provided to the sperm bank was false. However, Xytex insists that the lesbian couple had been was "clearly informed the representations were reported by the donor and were not verified by Xytex".

The couple is seeking punitive damages and other compensation. Their lawyer, Nancy Hersh, says that people who resort to sperm banks are often emotionally fragile. "What I really want to see happen is some regulation and some evidence of a consciousness of the fact that they are dealing with vulnerable people who are relying on them," she told AP.



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April
25
 

Colombia close to legal euthanasia

Colombia’s Health Ministry has finally drawn up guidelines for voluntary euthanasia, 18 years after the country’s supreme court ruled that it was a constitutional right. Health Minister Alejandro Gaviría told media that only competent adults would be able to request the procedure, that only patients with a terminal illness would be eligible, and that if the patient is unconscious, relatives must present audio, video, or written proof that he wanted to be euthanased. Minors and patients with degenerative diseases will not be able to receive a lethal injection.

Despite the 1997 ruling, Colombian law-makers dragged their heels on the issue and never drafted protocols. As a result, doctors feared that they could be charged with homicide if they helped someone to die.

The Catholic Church, one of the principal opponents of euthanasia in Colombia, was scathing in its comments. It told the Health Ministry that legalisation “is a grave attack against the dignity of the ill and against the sanctity of the basic right to life, enshrined in Article 11 of the Constitution.”

 “It would be good, Mr. Minister,” it said in a letter, “if your ministry, so interested in regulating euthanasia and abortion, put the same effort into finding an effective solution to the crisis in the health-care sector and the needs of the poorest”.



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April
25
 

Non-human rights battle continues

A New York State Supreme Court judge has ordered Stony Brook University to justify its detention of two chimpanzees, following a request from an animal rights group, The Nonhuman Rights Project (NhRP).

The court order, issued by Justice Barbara Jaffe on Monday, demands that Stony Brook “show cause” as to why the two chimps, Leo and Hercules, should not be immediately released and transferred to Florida’s Save the Chimps sanctuary (a refuge nominated by NhRP).

The two chimps are being kept in a Stony Brook lab on Long Island and used for biomedical experimentation. 

Animal Rights organisations celebrated the inclusion of phrase ‘habeas corpus’ – a means of redressing the unlawful detention of prisoners – in the writ, though Justice Jaffe later struck the language from the document and emphasized that it was simply a formal way of directing the university to her courtroom to present its case.

Supporters remain emboldened, saying that the issuing of the writ is in itself a very positive step. Natalie K. Prosin, the executive director of NhRP, said she was “grateful for an opportunity to litigate the issue.”

The NhRP has made a number of unsuccessful attempts to have courts recognize chimpanzee “rights”. In 2013 representatives from the group filed three separate suits in New York, in each case claiming that an animal had had its rights denied by his owners. In December last year, a five-member state judicial panel in Albany unanimously ruled against NhRP in its attempt to have an older chimp named Tommy released from captivity.

Critics of the animal rights movement were disappointed at Judge Jaffe’s decision.

“Nonhuman animals do not have legal rights any more than they have legal responsibilities,” said Bob Kohn, a technology lawyer in Manhattan who has filed briefs opposing efforts to secure human rights for chimps and other animals. “For a court to hold otherwise would have tremendous adverse legal and moral implications for mankind.”

Others were pleased to see the writ issued. Lawrence H. Tribe of Harvard Law School believes that the writ habeas corpus should be available for “other beings whose capacities are limited but who are potentially capable of bearing rights”. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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April
25
 

Primed for resignation

The scandal-ridden field of social priming research has taken yet another blow. Leading social psychologist Jens Förster has resigned his prestigious Alexander von Humboldt Professorship at Ruhr University Bochum (RUB) after being found responsible for data manipulation.

Förster, formerly a leader in his field, was investigated by a Dutch national research integrity panel in 2014 and found to have manipulated data in a 2012 study about the effect of auditory and olfactory ‘priming’ on cognitive ability.

Förster’s resignation comes following another broader reaching investigation conducted by his former employer, the University of Amsterdam (UvA). The results of that investigation are yet to be published, but a UvA source says that the report is finished and that Förster has been informed of the findings.

Förster denies any wrongdoing and feels like he is “the victim of an incredible witchhunt”. In a blog-post on his personal website following his resignation, he offered a number of philosophical reflections on social science: "I will leave the materialistic and soulless production approach in science” he said. “I changed my approach to life completely. I do not further want to chase after publications as was the rule elsewhere”.

In the 2014 report, the Netherland’s Board of National Research Integrity  found that some of Förster’s reported results were “statistically speaking virtually impossible”, and that “conclusion that research data must have been manipulated is considered unavoidable”. Förster’s 2012 Social Psychological and Personality Science paper has since been retracted.

The field of social priming has been the victim of several high-profile cases of research fraud. After Dietrich Stapel, another  Dutch social priming expert, was exposed in 2012, laureate Daniel Kahneman warned that the lack of integrity threatened the whole field. “I see a train wreck looming,” wrote Nobel in an open email to psychologists who work in social priming: “your field is now the poster child for doubts about the integrity of psychological research”.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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April
25
 

German IVF mum to give birth to quadruplets

A 65-year-old German woman has fallen pregnant via IVF to quadruplets, to the surprise of some and the anger of others. 

Annegret Raunigk, a language teacher and mother of 13, travelled to a clinic in the Ukraine to receive IVF – German laws prohibited her from receiving the treatment in her own country. She was implanted with eggs and sperm from donors. Seemingly contrary to the doctor’s expectations, all four of the eggs developed into embryos. The chance of a natural quadruplet pregnancy is otherwise one in 13m.

Raunigk, now her fifth month of pregnancy, said she decided to have more children after her youngest daughter, Lelia, nine, asked her for a sibling.

Significant risks accompany pregnancies like Raunigk’s. The pregnant mother is susceptible to high blood pressure, pregnancy diabetes and pre-eclampsia, all of which impact on each other. Risks for the babies include cerebral bleeding, paralysis, and sight and hearing problems.

Karl Lauterbach, a leading Social Democrat politician in Germany, called Raunigk’s pregnancy “a very questionable case”: “Such a pregnancy cannot be allowed to become an example for anyone to follow,” he told the German newspaper Der Spiegel.

Christian Democrats health expert Jens Spahn, called Raunigk’s decision “negligent”.

Ms Raunigk’s gynaecologist, Kai Hertwig, does not seem concerned. A German television station quoted her as saying that everything was going well, despite the usual strains of a quadruple pregnancy.

 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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April
25
 

The complexities of brain death

A forthcoming article in the journal Neurology provides insight into the complexities of achieving international consensus on brain death. 

The article by a team of neurologists and medical researchers from clinics and universities around the US catalogues conceptions of brain death in medical institutions around the world. 

The authors found that institutional protocols were absent or poorly understood in a significant number of low-income countries. They also found that “substantial differences in perceptions and practices of brain death exist worldwide” and that “whether a harmonized, uniform standard for brain death worldwide can be achieved remains questionable.”

The study – the first to examine opinions in a broad range of countries – involved an electronic survey which was distributed globally to physicians with expertise in neurocritical care, neurology, or related disciplines who would encounter patients at risk of brain death. Physicians from 91 countries responded.

The results were quite revealing.

Doctors around the world leave different periods of time following initial neurologic deterioration before they declare brain death. The most common waiting period is between 6 and 10 hours, but reported results ranged from less than 5 hours to more than 25 hours. 

“There were several discrepancies regarding the conduct of apnea testing”, the authors report. Views about the import of ancillary testing (EEGs, Dopler ultrasounds etc.) differed significantly between countries.

In their discussion of the results of the study, the authors flagged a need for greater collaboration between medical institutions from different countries:

"To promulgate a unified stance on brain death, valuable for practitioners everywhere, consensus among leading experts in the field is urgently required…[our] findings underscore the importance of international partnerships between institutions to improve medical education and alleviate critical human resource needs in lower-income settings."

In a comment on the article, Dr. James Bernat observed that there is signficant disagreement on brain death even within the US.

“[There is] a surprising degree of practice variation among hospitals in the United States. In contrast to the international circumstance, in which practice disparities arise more because of legal, cultural, or religious differences, those in the United States result more from the biases and ingrained practices of individual physicians.” 


This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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April
18
 

Feverish vaccine debate spreads to Australia

Last Sunday the Australian government announced a controversial new immunisation policy that makes welfare support for families conditional on child immunisation.  

“The no jab, no pay” welfare plan, which has bipartisan support in the Australian federal parliament, will require of parents that they immunise their children against serious infectious diseases such as measles, mumps, rubella, tetanus and polio.

Parents who refuse to immunise their children could lose up to A$2100 per child per year in welfare payments.

Social services minister Scott Morrison, who announced the plan, said that the medical community was united in its support for universal vaccination, and that “objections” were no long acceptable.

“The overwhelming advice of those in the health profession is it’s the smart thing and the right thing to do to immunise your children.”

Federal opposition leader Bill Shorten agreed:

“We believe fundamentally in the science of vaccinations and we fundamentally believe that policy should be made by the best evidence and the best science”.

The announcement has met fierce criticism from many members of the public.

An online petition against compulsory vaccinations in Australia that states “all parents deserve to make an uncoerced choice” has received more than 3000 signatures in five days.

Bond University associate professor Stephen S Holden called the government’s new policy “ethically precarious”:

“Here’s what lies at the heart of the problem: the risk of adverse reactions from vaccines is actually very small but families unfortunate enough to suffer a vaccination reaction are unlikely to be consoled by this improbability. They may be little moved by the fact that their loss nonetheless served the common good.”

Experts estimate that 39,000 Australian children under seven have not received immunisation because their parents are vaccine objectors.



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April
18
 

Unreported clinical trial data “unethical”

The World Health Organization (WHO) has called for the disclosure of results from clinical trials for medical products, whatever the result. The move aims to ensure that decisions related to the safety and efficacy of vaccines, drugs and medical devices for use by populations are supported by the best available evidence.

“Our intention is to promote the sharing of scientific knowledge in order to advance public health,” said WHO official Marie-Paule Kieny. “It underpins the principal goal of medical research: to serve the betterment of humanity.”

According to WHO, there is increasing empirical evidence to suggest that the results of many clinical trials are suppressed from the public. One study that analysed the reporting from large clinical trials (more than 500 participants) registered on ClinicalTrials.gov and completed by 2009 found that 23% had not reported any results. These unreported trials included nearly 300,000 participants.

Even where results are released, the process of publication can be very protracted. Among clinical trials of vaccines against five diseases registered in a variety of databases between 2006-2012, only 29% had been published in a peer-reviewed journal by the WHO-recommended deadline of 24 months following study completion.

WHO has recommended that from now on the main findings of every clinical study should be submitted to a peer-reviewed journal within 12 months after data collection ends and be published -- in an open-access journal unless there is a specific reason why that's impossible -- within 24 months.

"It's unethical to conduct clinical research without reporting the results," says immunologist Dr. Vasee Moorthy, author of a paper discussing the rationale behind the WHO’s new statement. Europe and the United States have already made important regulatory strides to registering trials and making their outcomes public, Moorthy says. 



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April
18
 

Bad ideas never die; they just plea bargain

A series of cases in Tennessee suggests that women may be trading sterilization for reduced jail sentences in the US. According to a report by AP, Nashville prosecutors have done deals with women at least four times in the past five years.

In the latest case, a 36-year-old woman with a long history of mental illness, Jasmine Randers was charged with neglect after her 5-day-old baby mysteriously died during the night. Her lawyer alleges that the prosecution refused to discuss a plea bargain unless she agreed to be sterilized.

In conjunction with similar incidents in Virginia, West Virginia and California, lawyers think that many sterilizations may be organised out of view by the public and the courts. "It's always been more of 'If your client is willing to do this, then I might be inclined to talk about probation,'" one lawyer commented.

"The history of sterilization in this country is that it is applied to the most despised people — criminals and the people we're most afraid of, the mentally ill — and the one thing that that these two groups usually share is that they are the most poor. That is what we've done in the past, and that's a good reason not to do it now," says Paul Lombardo, of Georgia State University, an historian of eugenics.

The current district attorney for Nashville has the use of sterilization as a condition for a plea bargain.

 “Any time a woman is given a choice between prison and this surgery, that is inherently coercive, even in cases where there is no mental illness,” Ms Randers’ attorney says.



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April
18
 

Gene of the Week 2: voting preferences

According to researchers at TwinsUK, a registry of identical and non-idential twins, genes are the best predictor of how people will vote. “Our choices at the polling booth may not be as free or rational as we would like to believe,” they conclude in The Conversation.

“We found that voting Conservative (or not) is strongly influenced by genetics. When it came to voting Tory, we found that 57% of the variability (differences or similarity) between people’s voting preferences were due to genetic effects,” writes Professor Tim Spector, of Kings College London.  The percentages for UKIP were 51% and for both Labor and the Green Party 48%.

Only a vote for the Liberal Democrats could not be explained by genetics.

“Previous studies have also shown strong genetic influences on right-wing views – be they for or against. We and others have demonstrated consistent genetic influences on all measurable aspects of our personalities. The consensus is that these political leanings are mainly due to the genetic makeup of our underlying personalities.”



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April
18
 

Gene of the Week 1: sex offending

The father of modern criminology, the Italian sociologist Cesare Lombroso (1835-1909) believed that criminality was genetically determined. A “born criminal” could be detected by the presence of a long list of “stigmata” such as an asymmetrical faces, sloping forehead, large ears or left-handedness. This idea has been largely discredited, but, it flowers as soon as water floods the desert sands.

Newspapers last week featured headlines like: “Sex crimes may run in a family's male genes” or “Genetic factors were found to increase the risk of a sex crime conviction” or “Sex offending is written in DNA of some men” after the release of a Swedish study of the genetic link to sex crimes.

Researchers at the Karolinska Institutet in collaboration with Oxford reported in the International Journal of Epidemiology that close relatives of men convicted of sexual offences commit similar offences themselves more frequently than comparison subjects. This was due to genetic factors rather than shared family environment. They found that about 2.5% of brothers or sons of convicted sex crime offenders are themselves convicted for sex crimes. The equivalent figure for men in the general population is about 0.5%. 

As the Daily Mail helpfully pointed out, the late Jimmy Savile, the notorious British entertainer who allegedly abused hundreds of people, many of them children, had a brother (now deceased) who is also suspected of having committed several sex offenses.

"Importantly, this does not imply that sons or brothers of sex offenders inevitably become offenders too", says Professor Niklas Langstrom, the study's lead author. "But although sex crime convictions are relatively few overall, our study shows that the family risk increase is substantial. Preventive treatment for families at risk could possibly reduce the number of future victims."

What does he mean by “preventative treatment”? First of all, the fathers and brothers of sex offenders could be offered psychological counselling to foster awareness of sexual boundaries and help in conflict management. Second, “psychological and pharmacological help to decrease individual risk factors such as cognitive distortions, emotional instability and hypersexuality”.

A journalist with the journal Science, Emily Underwood, suggested that the results should be taken “with a generous dash of salt” because of limitations with the data. “We’re a long way from pinning down genes that can explain why a person commits rape or any other sex crime.”

Nathaniel Comfort, an historian of genetics at Johns Hopkins University was less restrained. “Can you believe this? A family correlation taken as a genetic link–for a predisposition to crime. This is so simplistic it’s like 1910 all over again. It’s not back to the future–it’s ahead to the past.”



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April
18
 

Should medicine leave the gold standard of randomized trials?

When you google “randomized controlled trials”, you find an abundance of news stories and government agency websites which describe them as the “gold standard” of medical research. Take, for instance, a recent press release from Johns Hopkins University: “They found that only 11 of the programs met the scientific ‘gold standard’ for reliability in the studies—using randomized clinical trials.”

However, the medical profession is far less confident. Adding to the chorus of researchers and clinicians is an article in The Lancet which calls for a more “ecumenical” and flexible approach to acceptable study designs.

David S Jones and Scott H Podolsky, both from Harvard Medical School, point out that randomized trials do not have a long history. The first one took place in 1948 and the first instance of describing them as the “gold standard” dates back to only 1982.

While RCTs are clearly useful, they argue that “ever-growing databases provided by electronic medical records” and personalised medicine may be eroding their status.

They describe a rigid insistence on RCTs as “medical monotheism”.  

“… the emergence of biomedicine within the monotheistic traditions of Europe and the Middle East imbued medicine with a commitment to universal truths, unitary paradigms, and a ‘single-minded approach to illness and care’. The idea of a gold standard, that there is one best way to do something, whether conduct clinical research, diagnose a disease, or treat a patient, emerges from this underlying commitment.”

But in a world where universal truths are fading and governments have abandoned the yoke of a financial gold standards, perhaps RCTs need to be dethroned as well. 



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April
18
 

Canadian bioethicist attacks conscientious objection

The Canadian Medical Association is digging in its heels to protect doctors’ right of conscientious objection to euthanasia and assisted suicide, which will soon become legal. In an interview with the National Post, CMA president Chris Simpson  said recently, “we simply cannot accept a system that compels physicians to go against their conscience as individuals on something so profound as this.”

Don’t listen to him, warns one of Canada’s most prominent bioethicists. No doctor should have the right to conscientious objection, he says.

Professor Udo Schuklenk, of Queens University and editor-in-chief of the journal Bioethics, delivered a blistering attack on conscientious objection in medical practice in his blog:

The very idea that we ought to countenance conscientious objection in any profession is objectionable. Nobody forces anyone to become a professional. It is a voluntary choice. A conscientious objector in medicine is not dissimilar to a taxi driver who joins a taxi company that runs a fleet of mostly combustion engine cars and who objects on grounds of conscience to drive those cars due to environmental concerns.

Professor Schuklenk puts forward two reasons. First, medicine is a service industry and “Patients are entitled to receive uniform service delivery from health care professionals. They ought not to be subjected to today’s conscientious objection lottery.” This is a particular concern in a country as vast as Canada, where doctors may be scarce in rural areas.

Second, he regards and appeal to conscientious objection as a fig leaf to give privileged protection to practicing Christians. “Conscience clauses today are by and large a concession of special rights to Christian health care professionals, at least in secular Western democracies.”



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April
17
 

Even for Ebola, unproven treatments are dicey, say bioethicists

In a target article in the latest edition of the American Journal of Bioethics, three bioethicists from the National Institutes of Health question the ethics of providing unproven interventions to Ebola victims and those at risk. 

Seema K. Shah, David Wendler and Marion Danis describe the detrimental effects of providing an unproven treatment – in particular (where the treatment fails to work) decreased trust in doctors and the medical profession generally.

The ethicists conclude that it may be more beneficial to focus on other methods of stemming the spread of the disease, such as building up healthcare infrastructure and providing healthcare workers to affected areas, rather than focusing energies on distributing what are potentially unbeneficial, or worse, harmful drugs.

Concerning patient trust in medical professionals, the authors observe: 

“The practice of medicine was once coloured by the public’s perception of physicians as peddling goods that were unlikely to cure them…it would be problematic and could undermine trust in the medical profession if physicians were to routinely offer unproven remedies without much reason to support their use…” 

They also consider the patent truth that there are often serious limitations placed on healthcare resources.

“In weighing their competing priorities, funders seeking to do the most good as efficiently as possible may reasonably choose to prioritize building public health and health care infrastructure…health systems on West Africa have been severely strained by the crisis, and both health systems and regulators…may have many priorities ahead of providing access to experimental therapies”.

“[Healthcare policy makers] should prioritize the provision of and further research into supportive care interventions that are effective against Ebola virus disease”, the authors conclude.   



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April
12
 

Was the Boston bomber too young to be responsible?

As the trial for the Boston Bomber Dzhokhar Tsarnaev draws to a close, experts are debating whether the accused’s age diminishes his culpability. Together with his brother, 19-year-old Tsarnaev planned and executed the devastating Boston Bombings on April 15, 2013, which killed three civilians and injured 264 others. In a subsequent manhunt the Tsarnaev brothers killed a police officer and wounded 15 others.

Like Dzokhar’s defence lawyers, Temple University psychology professor Laurence Steinberg acknowledges that adolescence does not entail innocence. He does, however, believe it might diminish the defendant’s guilt:

“The issue is not whether adolescent immaturity excuses criminal conduct — it doesn’t — but whether it diminishes someone’s responsibility for his actions, in much the same way that coercion or unusually strong emotions might…

“Research… has identified the neural bases of adolescents’ intensified susceptibility to peer pressure and is revealing the period to be one of heightened neuroplasticity, or capacity for the brain to change.”

Writing in the Boston Globe, Harvard law professor and former federal judge Nancy Gertner suggested that adolescent psychology and neuroscience are worthy of consideration:

“He was 19, just barely past the date at which the law acknowledges an adolescent’s immature brain. But while the law recognizes 18 as the cutoff point for the death penalty, neuroscience suggests that the period of relative brain immaturity stretches into the early 20s.”

David Hoose, death penalty lawyer and legal analyst, noted that the trial has many recent legal precedents. "This is a very hot issue in criminal justice circles these days ... that young men really do not mature fully in terms of the neuroscience until they are in the mid-20s," he said. "This is a kid who one minute is goofing around with his college buddies and the next minute is looking at jihadi movies."



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April
12
 

US bioethics commission releases report on neuroscience and law

On March 26 the US Presidential Commission into the Study of Bioethical Issues released the second volume of its report in developments in neuroscience. Volume II of Grey Matters: Topics at the intersection of neuroscience, ethics, and society examines three key areas in which neuroscience intersects with ethics.   

Perhaps the most topical – considering media discussion surrounding the sentencing of Boston Bombing perpetrator Dzhokhar Tsarnaev, is the role of neuroscience in the courtroom. The report catalogues the various contributions that neuroscience could potentially make to our understanding of human action and the criminal mind, and also examines ethical concerns such as the potential for misinterpretation and overstatement of the implications of neuroscientific research.

Among a number of recommendations, the authors of the report call for educational tools to help judges and lawyers grasp the rudiments of neuroscience.

“Government bodies and professional organizations, including legal societies and nonprofit organizations, should develop, expand, and promote training resources, primers, and other educational tools that explain the application of neuroscience to the legal system for distribution to members of the public, jurors, judges, attorneys, and others.”

The report also cautions against the perennial temptation to overstate the implications of scientific research.  

“Neuroscientists, attorneys, judges, and members of the media should not overstate or rely too heavily on equivocal neuroscientific evidence to draw conclusions about behavior, motivations, intentions, or legal inferences.”

In an interview with The Atlantic, Stephen Hauser of the University of California spoke of the ideal that scientists and legal practitioners should aim for:

“The key issue here is that a sophisticated knowledge of science, its strengths and limitations, is entered into the deliberative process during court proceedings. And this will require a back and forth interaction between sophisticated neuroscientists and sophisticated legal minds.” 



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April
12
 

Informed consent dilemma: Jehovah witness and child die

The deaths in Australia of an unborn child and its mother who refused a blood transfusion because she was a Jehovah’s Witness have highlighted the risks of patient autonomy.

In a case in the Internal Medicine Journal, doctors at Prince of Wales Hospital in Sydney report that a 28-year-old woman with acute promyelocytic leukaemia refused all blood products even though she knew that her decision might lead to her death. Her foetus died in utero and she died several days later.

What were the responsibilities of the doctors treating the woman? The staff were distressed because they believed that both deaths were easily avoidable. However, the doctors note that: “

“maternal autonomy was respected – which reflects broad legal and ethical consensus that competent adults may refuse any form of medical intervention – even where that intervention is lifesaving… Circumstances where foetal and maternal autonomy conflict, or where foetal beneficence conflicts with maternal autonomy, create challenges…  as more foetal-specific treatments become available, conflict between the best interests of mother and foetus will increase.”

Underlying the dilemma is the realization that if the woman had asked doctors to terminate the life of her child, they would almost certainly have complied – also out of respect for her autonomy. Sometimes informed consent leads to agonizing dilemmas. 



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April
12
 

WHO alarmed by C-section rise

There is no evidence that a Caesarean section rate of more than 10% saves the lives of mothers or babies, says the World Health Organization. In a new statement it recommends that C-sections be performed based only on the needs of the patient, rather than focusing on target rates.

Caesarean section is one of the most common surgeries in the world, with rates continuing to rise, particularly in high- and middle-income countries. In the US, about one in three women gives birth via C-section. In Brazil more than half of all births are C-section, with rates rising to 80% in private hospitals.

However, WHO says that there is no evidence showing the benefits of caesarean delivery for women or infants who do not require the procedure. As with any surgery, C-ections are associated with short and long term risk which can extend many years beyond the current delivery and affect the health of the woman, her child, and future pregnancies. These risks are higher in women with limited access to comprehensive obstetric care.

Since 1985, the international healthcare community has considered the “ideal rate” for caesarean sections to be between 10% and 15%. New studies reveal that when caesarean section rates rise towards 10%, the number of maternal and newborn deaths decreases. But beyond that mortality rates do not improve.

“These conclusions highlight the value of caesarean section in saving the lives of mothers and newborns,” says WHO’s Marleen Temmerman. “They also illustrate how important it is to ensure a caesarean section is provided to the women in need - and to not just focus on achieving any specific rate.”

Across a population, the effects of caesarean section rates on maternal and newborn outcomes such as stillbirths or morbidities like birth asphyxia are still unknown. More research on women’s psychological and social well-being is still needed. Due to their increased cost, WHO says, high rates of unnecessary caesarean sections can pull resources away from other services in overloaded and weak health systems.



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April
12
 

Health workers faces dual loyalty in US jails

Guantanamo Bay is not the only place where American health workers’ ethics clash with the need for security. This is also the case in American jails, according to a two-year study of New York's Rikers Island jail complex published in Harvard’s Health and Human Rights Journal.

The authors, who are all involved in New York’s correctional services health system, express concerns “about the extent to which the mental health service is involved in assessments that are part of the punishment process of the security apparatus.” In particular, they question whether health workers should be involved in assessing inmates for solitary confinement.

“The most prominent example of dual loyalty is the ‘clearance’ of patients for punishment in solitary confinement. Security staff members assess whether an inmate has broken the rules of the jail or prison and then presents the inmate to health staff for confirmation that the inmate is physically and mentally sound enough to be placed in solitary confinement, generally described as 23 hours per day in a small cell, with an hour per day of recreation and some nominal services such as showers and occasional phone calls. …

“Whatever the security reasoning for placement in such units, the participation of health staff in this process is cumbersome, time intensive, of questionable value, and does not reflect a patient-health provider interaction that is in the patient’s best interest. In fact, many institutions employ health and mental health services expressly to maintain the practice of solitary confinement.”

The problem is complex. The study found more than one-third of mental health workers believe that their ethics are regularly compromised. However, correctional services officers often believe that inmates exploit the sympathy of health workers to avoid punishment. "Don't tell us that this inmate who came in fine yesterday and didn't have no problems, all of the sudden now that it's time to go to the bing [solitary], he's got psychological problems," Norman Seabrook, president of the Correction Officers' Benevolent Association, told Associated Press



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April
12
 

Controversial doco investigates China’s organ donation system

China’s organ transplant system is highly controversial. The government admits that most of the organs used to come from executed prisoners. The official policy changed on January 1, when the head of China’s organ donation committee, Huang Jiefu, announced that only voluntarily donated organs from civilians can be used in transplants.

There are many reports that organs have come from prisoners of conscience, especially Falun Gong members, not criminals on death row. This is angrily denied by the Chinese government.

In this documentary, “Human Harvest: China’s Organ Trafficking”, which appeared on Australia’s SBS channel, two Canadian researchers, David Kilgour and David Matas, insist that there is sufficient evidence to believe claims of organ harvesting by the Falun Gong. (If the YouTube video is not visible in your region, here is a link to an article on the SBS website.) 



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April
12
 

Victims of Guatemala syphilis experiments to sue Johns Hopkins

Victims of the infamous Guatemala syphilis experiments have filed a lawsuit against Johns Hopkins University, which they say was complicit in authorising the research.

During the experiments, which took place in the 1940s and 50s and were overseen by US researcher Dr John C. Cutler, many hundreds of unsuspecting Guatemalans were infected with syphilis, gonorrhoea and other sexually-transmitted diseases.

The US$1 billion lawsuit seeks to hold the university responsible for the experiments, because its doctors held important roles on panels that reviewed federal spending on sexually-transmitted-disease research, including on the experiments in Guatemala. It also names the Rockefeller Foundation and pharmaceutical company Bristol-Myers Squibb as defendants.

The plaintiffs go as far as to claim that Johns Hopkins was actively involved in the experiments:

"[they] did not limit their involvement to design, planning, funding and authorization of the Experiments; instead, they exercised control over, supervised, supported, encouraged, participated in and directed the course of the Experiments."

Johns Hopkins says that the allegations are groundless. Kim Hoppe, a spokesperson for the university, told The Baltimore Sun that the suit “is an attempt by plaintiffs’ counsel to exploit a historic tragedy for monetary gain.”

Legal experts said the lawsuit's arguments could be a stretch. Today, professors who frequently serve on a volunteer basis with the National Institutes of Health, for example, are generally considered to be acting independently and not in their capacity as university faculty, said Holly Fernandez Lynch, executive director of the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at Harvard University Law School.  



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April
12
 

Kansas passes novel anti-abortion bill

Governor Sam Brownback   

The fierce battle over abortion legislation in the US has taken another turn – this time in Kansas. On Tuesday Republican governor Sam Brownback signed into law a bill that bans the controversial “dilation and evacuation” abortion procedure. The bill, drafted by the National Right to Life Committee to Kansans for Life, was approved by a significant majority in both the senate and legislature.

In this procedure, the woman’s cervix is dilated and the foetus removed using a surgical vacuum, forceps, a curette, and other instruments.

The bill gives the procedure the dysphemistic name ‘dismemberment’. It is banned except when necessary to save a woman’s life or prevent irreversible damage to her physical health. Doctors cannot use forceps, clamps, scissors or similar instruments on a fetus to remove it from the womb in pieces. Pro-life groups have welcomed the law as a positive step toward stemming the high abortion rate in the US.

Two abortion rights groups that operate Kansas clinics with abortion services, Trust Women and Planned Parenthood of Kansas and Mid-Missouri, plan to challenge the law. They believe that it is vulnerable as it bans some abortions before a foetus can survive outside the womb and contains no mental health exception for the mother. 



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April
03
 

Kristján Kristjánsson on virtuous medical practice

Professor Kristján Kristjánsson is professor of Character Education and Virtue Ethics at the University of Birmingham, and Deputy Director of the Jubilee Centre for Character and Virtues. Together with five other academics he recently published a major research report on the role of the character and virtues in the medical profession in Britain. 

The paper was based on research involving four medical schools in the UK, and medical practices in roughly the same geographical areas as those schools. A survey was answered by 549 1st year undergraduates, final-year students and experienced professionals. 85 of those were subsequently interviewed. 66% of the experienced doctors were GPs.

Professor Kristjánsson recently spoke with BioEdge about the broader implications of his research.

*****

Xavier Symons: Based on your research, do you believe there is there a problem with cognitive and/or deontological approaches to teaching medical ethics? 

Kristján Kristjánsson: I did consider this a problem – for purely philosophical reasons – before we started the research project, and the findings provided empirical backbone to those concerns. They revealed a strange mismatch in the UK between general medical ethics (bioethics), where virtue ethics has become the theory of choice, and professional medical ethics which is still focused almost entirely on formal rules, regulations and codes of conduct, or highly abstract deontological principles (such as respect for patient autonomy).

"medical phronesis is not inborn – it requires attention and training, both in medical education and further in the workplace." 

The doctors – especially the more experienced ones – complained that the rules they had learned were too general, with no attention to particularities such as special circumstances and special personal characteristics of individual patients. They also complained about the over-estimation of compliance and the under-estimation of professional judgement. Some attention seems to be paid in medical ethics education to what used to be called “bedside manners” (dress code, manner of speaking, demeanour, politeness, etiquette, cultural sensitivity). However, between the codes and the manners the “moral middle” gets squeezed out: moral character as learning to perceive moral salience, responding emotionally in the right way and making practically wise decisions based on the most virtuous course of action. As many doctors correctly pointed out, medical phronesis is not inborn – it requires attention and training, both in medical education and further in the workplace. 

In ‘Virtuous Medical Practice’ you asked doctors what they thought were the most important virtues for a medical practitioner to acquire. Was there a general consensus?

The consensus was astounding across the three cohorts, much more so than in our two parallel projects into virtues in teachers and lawyers. Fairness, honesty, judgement, kindness, leadership and teamwork scored highest as the virtues of the ideal practitioner. The respondents attributed the same strengths to themselves, except for judgement and leadership, and those also fed into the way they responded to the moral dilemmas in the survey. Some gender differences were noticed (with kindness scoring higher for women).

"Most of the conflicts that the doctors mentioned did not involve a choice between virtue and vice, but rather hard choices between two or more competing virtues."

What do you think their answers show?

They seem to show that students enter medical studies with a fairly mature and robust view of the kind of doctor they want to be, and this view does not change much during the course of their study or work experience. An anecdotal explanation could be that quite a few students enter medicine from families where a parent or a grandparent is also a doctor. Thus, professional virtues and values may filter through down the generations. On a more negative note, the most disconcerting finding of the study, in my view, was that more than 20% of experienced doctors say they (“sometimes” or “often”) experience difficulties in living out their characters, that is they fail to live up to their own ideals and moral expectations of themselves. The reasons they give are not surprising, however: too little time (to consult, discuss, treat), unrealistic targets and shrinking budgets.

Do you yourself share these doctors’ view of important virtues? (i.e. would you have selected other virtues)?

I find the above list reasonable as such. However, lists of this kind are less important than the capacity to develop the meta-virtue of phronesis for adjudicating virtue conflicts. Most of the conflicts that the doctors mentioned did not involve a choice between virtue and vice, but rather hard choices between two or more competing virtues. 

"Consultation cannot be learnt from rule books, either about abstract principles or earthbound mannerisms."

Based on your research, what do you think are the most important changes that need to be made to medico-ethical education models? 

The main message I take from this research is the time-honoured one that the core currency in medicine is consultation. Consultation cannot be learnt from rule books, either about abstract principles or earthbound mannerisms. It involves trustworthiness which is a moral virtue, not a rule or a codifiable behavioural procedure. At present, medical ethics education in the UK does not aid aspiring doctors in developing such virtues. In the Report, we conclude that medical ethics education needs to be more virtue based, focusing on a) virtue literacy, b) virtue responsiveness (recognising virtue-relevant situations) and c) the development of practical moral wisdom (phronesis), for example by providing time and space for medical students to discuss and reflect upon the moral dilemmas that all doctors will meet with in their practice.  



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
31
 

CRISPR technology brings precise genetic editing – and raises ethical questions

A group of leading biologists earlier this month called for a halt to the use of a powerful new gene editing technique on humans. Known by the acronym CRISPR, the method allows precise editing of genes for targeted traits, which can be passed down to future generations.

With this explainer, we’ll look at where this technique came from, its potential and some of the issues it raises.

CRISPR stands for clustered regularly interspaced short palindromic repeats, which is the name for a natural defense system that bacteria use to fend off harmful infections.

Bacteria are infected by other microorganisms, called bacteriophages, or phages. The intricate details of the mechanism were elucidated around 2010 by two research groups led by Dr Doudna of the University of California Berkeley and Dr Charpentier of Umeå University in Sweden.

The CRISPR system recognizes specific patterns of DNA from the foreign invaders and decapacitates them by cutting the invader’s DNA into pieces. The way that the bacteria target specific DNA and cleave it gave scientists a hint of its potential in other applications.

In 2013, two research groups, one lead by Dr Zhang of Massachusetts of Institute of Technology and the other by Dr Church of Harvard University, successfully modified this basic mechanism and turned it into a powerful tool that can now cut human genomic DNA at any desired location.

The ability to cut DNA or genes at specific locations is the basic requirement to modify the genome structure. Changes can be made in the DNA around the cleavage site which alter the biological features of the resulting cells or organisms. It is the equivalent of a surgical laser knife, which allows a surgeon to cut out precisely defective body parts and replace them with new or repaired ones.

Tool for gene discovery   

Scientists have long sought after this sort of genome editing tools for living cells. Two other technologies, called zinc-finger nucleases and TALEN (transcription activator-like effector nuclease) are available to achieve the same result. However, the CRISPR technology is much easier to generate and manipulate. This means that most biological research laboratories can carry out the CRISPR experiments.

As a result, CRISPR technology has been quickly adopted by scientists all over the world and put it into various tests. It has been demonstrated to be effective in genome editing of most experimental organisms, including cells derived from insects, plants, fish, mice, monkeys and humans.

Such broad successes in a short period of time imply we’ve arrived at a new genome editing era, promising fast-paced development in biomedical research that will bring about new therapeutic treatments for various human diseases.

The CRISPR technology offers a novel tool for scientists to address some of the most fundamental questions that were difficult, if not impossible, to address before.

For instance, the whole human genomic DNA sequence had been deciphered many years ago, but the majority of information embedded on the DNA fragments are largely unknown. Now, the CRISPR technology is enabling scientists to study those gene functions. By eliminating or replacing specific DNA fragments and observing the consequences in the resulting cells, we can now link particular DNA fragments to their biological functions.

Recently, cells and even whole animals with desired genome alterations have successfully been generated using the CRISPR technology. This has proven highly valuable in various biomedical research studies, such as understanding the cause and effect relationship between specific DNA changes and human diseases. Studying DNA in this way also sheds light on the mechanisms underlying how diseases develop and provides insights for developing new drugs that eliminate specific disease symptoms.

With such profound implications in medical sciences, many biotech and pharmaceutical companies have now licensed the CRISPR technology to develop commercial products. For example, a biotech company, Editas Medicine, was founded in 2013 with the specific goal of creating treatments for hereditary human diseases employing the CRISPR technology. However, products derived from the use of CRISPR technology are yet to hit the market with FDA approval.

Call for ethical guidelines

With the CRISPR technology, scientists can now alter the genome composition of whole organisms, including humans, through manipulating reproductive cells and fertilized eggs or embryos. Those particular genetic traits are then passed down through generations. This brings hope to cure genetic defects that cause various hereditary human diseases, such as cystic fibrosis, haemophilia, sickle-cell anemia, Down syndrome and so on.

Unlike the current approaches of gene therapy which temporarily fix defective cells or organs through the introduction of corrected or functional genes, the CRISPR technology promises to correct the defect in the reproductive cells, producing progenies that are free of the defective gene. In other words, it can eliminate the root causes of hereditary human diseases.

In theory,then, hereditary features that people consider advantageous, such as higher intelligence, better body appearance and longevity, can be introduced into an individual’s genome through CRISPR mediated reproductive cell modifications as well.

However, scientists do not yet fully understand all the possible side effects of editing human genomes. It is also the case, that there is no clear law to regulate such attempts.

That’s why groups of prominent scientists in the field have recently initiated calls for ethical guidelines for doing such modifications of reproductive cells. The fear being that uncontrolled practice might bring about unforeseen disastrous outcomes in long run.

The guidelines call for a strong discouragement of any attempts at genome modification of reproductive cells for clinical application in humans, until the social, environmental, and ethical implications of such operations are broadly discussed among scientific and governmental organizations.

There is no doubt that the exciting and revolutionary CRISPR technology, under the guidance of carefully drafted and broadly accepted rules, will serve well for the well-being of human kind.

The ConversationShouguang Jin is Professor of Molecular Genetics and Microbiology at University of Florida. This article was originally published on The Conversation. Read the original article.



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March
29
 

Brittany Maynard speaks from grave to California senators

The leading assisted suicide lobby group, Compassion & Choices, has scored another public relations coup with the release of a third Brittany Maynard video. Nineteen days before she committed suicide on November 1, Brittany recorded a video demanding that California legislators endorse assisted suicide.

"The decision about how I end my dying process should be up to me and my family under a doctor's care. How dare the government make decisions or limit options for terminally ill people like me." 

After watching it this week, California’s Senate Health Committee approved an End-of-Life Option Act (SB 128) by a vote of 6 to 2. The bill will now be debated by the Senate.

Brittany was only 29 when she discovered that she had terminal brain cancer. Unable to access assisted suicide in her home state of California, she and her husband moved to Oregon where it is legal. In the final weeks of her life, Maynard cooperated with Compassion & Choices in launching a campaign for assisted suicide in California and nationwide. She was interviewed on CNN and in some major newspapers and magazines. With a professional PR team organised by C&C, she made two touching videos which have been seen millions of times around the globe.

“Making aid in dying a crime creates undue hardships and suffering for many people who are terminally ill and suffering tremendously,” Maynard said in the posthumous video, which was recorded on October 13 last year. “It limits our options and deprives us of our ability to control how much pain and agony we endure before we pass.”

She also declared that she was repelled by the idea terminal sedation, a method of euthanasia in which a comatose patient dies of starvation and dehydration.

The Senate Committee also heard testimony from opponents of SB 128. Marilyn Golden, senior policy analyst for the Disability Rights Education and Defense Fund, told the senators that there would be strong financial incentives for people to pressure disabled and depressed people into ending their lives. “It’s a deadly mix to combine our broken, profit-driven healthcare system and assisted suicide, which would instantly become the cheapest treatment,” she said. 



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
29
 

International drive to stop organ trafficking

Fourteen European nations have signed the first international treaty on organ trafficking.

The convention, which was initiated by the Council of Europe, was signed by Albania, Austria, Belgium, the Czech Republic, Greece, Italy, Luxembourg, Norway, Moldova, Poland, Portugal, Spain, Turkey and the United Kingdom. It is open for signature by any state in the world and enters into force when five states have ratified it.

Council of Europe Secretary General Thorbjørn Jagland described organ trafficking as “one of the most exploitative trades on the planet”:

It is hard to put exact figures on it, but we know that organ trading is big money. A young person from Eastern Europe might sell a kidney for 2,500 Euros. In Ukraine we know of cases where recipients have paid up to 200,000 Euros. This is one of the world’s top ten illegal money-making activities generating an estimated US$1.2bn in illegal profits globally every year.

It is believed to fund terrorism too. Just last month the Iraqi Ambassador to the UN asked the Security Council to investigate claims that the self-proclaimed ‘Islamic State’ are harvesting organs in order to bankroll their terror campaign.

Although organ trafficking is already illegal in most countries, there are many loopholes which the convention tries to close.

First, it criminalises organ trading even if there has been no trafficking, as many donors travel for surgery without being coerced. Second, it criminalises cooperation in organ trafficking. “It allows us to bring to justice the whole network of individuals driving the deal,” says Mr Jagland. And third, it provides for protection for the victims of trafficking, who may be both donors or recipients. 



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
29
 

Britain’s first IVF paternity case

Another dispatch from the Wild West of assisted reproductive technology. A British academic has been awarded £100,000 in damages and costs because his former wife tricked into believing that a son conceived with IVF was his, when the real father was her long-time lover. It is thought to be Britain’s first paternity suit involving IVF.

In 2004 the unnamed couple sought IVF in a Barcelona clinic. But instead of using her husband’s sperm, the wife used her lover’s. Over the next six years she continued with the charade, placing his name on the birth certificate, securing a generous maintenance payment after their divorce in 2010, and registering him as the father at the child’s school. Only in 2011 did she reveal the fraud. He said in the London Telegraph:

“It has deeply affected me and my family but importantly their own son – and my ex-son – which is absolutely appalling. This year-long litigation has been incredibly difficult and stressful and I have sometimes felt ‘I think I’m trapped in the wrong film’. “Not only did my ex-wife commit this deceit but she misled her own child too.”



This article is published by and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
28
 

After Germanwings: more psychological tests for pilots?

With French prosecutors saying that the Germanwings co-pilot Andreas Lubitz deliberately flew flight 4U9525 into a mountainside, there have been calls to introduce new and potentially ‘intrusive’ psychological testing procedures for pilots.

Former US aviation regulator Ken Quinn has called for more robust background screening and mental checks of new and experienced pilots. This may mean  “more intrusive checks of psychological history” than labour groups have historically accepted.

Psychologist and author Terry Lyles suggested that pilots undergo routine psychological testing after their initial exam.

“We test people here in [the US] for all kinds of things, for just CEO positions and president positions. So someone who has the lives of 149 people behind them, they should be tested every way possible to make sure that they are competent, healthy, sane, alert. All those things should be taken into account, and that's why we do it here in the U.S.”

Psychological screening programs for prospective pilots vary between airlines. Ironically Lufthansa, Germanwings’ parent company, is widely seen as having one of the best recruitment screening programmes in the industry, carrying out in-depth interviews and psychological testing before candidates can begin its two-year pilot training programme and filtering out more than 90% of initial applicants.

Many experts believe that no degree of psychological screening could prevent situations like the recent Germanwings tragedy.

Hans-Werner Teichmüller, president of the Deutsche Fliegerarztverband, an association of German doctors who examine pilots and flight crew, said that a resourceful pilot could always evade detection. “A pilot who intends to do something like this could be skilful enough to pass as a well-structured person, even if they were in danger of suicide,” he said. “Even with an examination process, you wouldn’t have 100% safety.”



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
28
 

The growing sperm bank industry

The sperm bank industry has been rapidly growing with profits to boot, according to an article published in the Financial Times this week.

There are a number of sperm bank clusters around the world, but one of the biggest is in Denmark, where sperm bank companies turn over huge profits each year in exchange for providing women from around the world with the opportunity to bear children. 

Danish sperm banks earned US$152 million in 2012 alone, according to the consultancy Copenhagen Economics. The multinational giant Cryos International has its headquarters in Demark.

Sperm banks around the world have been thriving due to certain sociological trends, such as the “delayer boom” — the trend for women to put off having children until they reach an age at which their fertility is reduced — and the growing acceptance in many Western societies of single-parent or same-sex families.

Most sperm donors chose to remain anonymous, and are paid nominal amounts for their donation. Sperm is sold at variable prices, depending among other factors on the amount of information available about the donor.

There are, however, concerns about a lack of regulation on sperm being shipped internationally. The number of children born to sperm donors could be much higher than authorities think, as there is no real way of accurately monitoring supply. Cryos and many of its US counterparts ship directly to women’s homes, which means women can self-inseminate and authorities might never find out.

Authorities are also concerned about the number of babies that a sperm donor could potentially father. The average Cryos donor fathers 25 children, but some could have 100 offspring. There are claims that some men have 200. 

Restrictions have been imposed on sperm banks in many Western nations. These limits, however, differ between nations. The possibility of international shipments makes laws in different countries less effective. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
28
 

Iran debates birth control restrictions

Iran plans to introduce major restrictions on the availability of birth control methods in a bid to stop rapid population decline. 

The government is currently considering two related bills intended to aid an increase in the birth rate.

One proposed law, bill 446, would curb women's use of modern contraceptives, outlaw voluntary sterilization [including vasectomies], ban the provision of information on contraceptive methods and dismantle state-funded family planning programs.

Another, bill 315, would mandate that organizations prioritize married men and women with children when hiring for specific jobs. 

International observers have decried the proposed reforms. Amnesty International warned that the bill could have "devastating consequences" for single women or women in abusive relationships. A spokeswoman for the Middle East and north Africa said:

“The authorities are promoting a dangerous culture in which women are stripped of key rights and viewed as baby-making machines rather than human beings with fundamental rights to make choices about their own bodies and lives..

“The bills reinforce discriminatory stereotypes of women and mark an unprecedented move by the state to interfere in people’s personal lives. In their zealous quest to project an image of military might and geopolitical strength by attempting to increase birth rates, Iran’s authorities are trampling all over the fundamental rights of women – even the marital bed is not out of bounds.”

But many Iranian politicians believe the legislative changes are vital to address a serious demographic crisis.

In October 2014, Iran’s supreme leader, Ayatollah Ali Khamenei urged Iranians to help increase the country's population, which he described as aging. "If we move forward like this, we will be a country of elderly people in a not too distant future," Khamenei said (according to the semi-official Fars news agency). "Why do some [couples] prefer to have one … or two children? Why do men or women avoid having children through different means?" the Iranian leader wondered. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
28