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  12:13:00 PM

A youthful voice enters the assisted suicide debate

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

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

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

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

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

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  12:31:00 AM

Mexico, the new surrogacy hotspot

Surrogate mothers photographed last year at Planet Hospital, a surrogacy agency which has been forced into involuntary bankruptcy. 

With India and Thailand, the destination of choice for people seeking surrogate mothers, closing their doors to foreigners, where has the market gone?

To Tabasco, in the far south of Mexico, one of its poorest states, according to a feature in The Guardian. Tabasco's legislation has permitted altruistic surrogacy since 1998, so surrogacy agencies are moving in to take advantage of the shift in demand. They advertise on the internet, mainly to the gay market, offering wombs for less than half the price charged in the United States.

“This is going to take off,” said Carlos Rosillo, who runs an agency called Mexico Surrogacy. “At the moment there are maybe 10 to 15 surrogate babies being born a month, but when it is that amount every day the real problems will start,” he said. “If we don’t get better prepared it will be chaos.”

A bit of creative documentation is required in order to prove that the surrogacy is altruistic.

“the surrogacy boom in Tabasco is theoretically rooted in a groundswell of poor women from a relatively conservative culture who are motivated by a generous urge to give affluent, often gay, foreigners the chance to become parents in return for little more than thanks, and the payment of their expenses…
“But many surrogates are also clearly motivated by the promise of earning more money than any other job available to them could provide, even if this means they have to also navigate a minefield of taboos and misinformation.

The Guardian spoke with a single mother of three who used to work as a maid. “I’m doing this for my children,” she said. “It’s a hard job, but its better than prostitution, which is the only other thing round here that can earn you a bit more.”

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  12:21:00 AM

Genetic testing backfires

You cannot possibly improve on this headline: “With genetic testing, I gave my parents the gift of divorce”. But it is strictly accurate, unlike most sensational headlines. The online magazine Vox earlier this month featured a first-person essay by George Doe, a pseudonym for an American biologist who used the results of tests from the company 23andMe as part of an undergraduate genetics curriculum.

One day he gave the test to his mother and father as a gift. The results turned out to be devastating for his family. They linked George to a hitherto unknown half-brother, sired by his father. When the family found out, there was an eruption of repressed emotions. His parents divorced and no one is talking to his father. “We're not anywhere close to being healed yet and I don't know how long it will take to put the pieces back together,” he says.

Although the company markets its test as a way to “Build your family tree and enhance your experience with relatives”, the ramifications can be immense. George Doe laments that the 23andMe test is really a very advanced paternity test.

“I'm really devastated at the outcome. I wrestle with these emotions. I love my family. This is nothing I ever would have wished. My dream would be to introduce Thomas to dad, to incorporate a new family tradition, to merge families. We all get to broaden our horizons and live happily ever after. At least right now, that's not what happened. I still hold out hope that in time we can resolve things. But I also worry that as these transitions happen there may have been some permanent emotional damage that may not be able to be undone.
“23andMe's way of protecting people is by giving users the chance to click that box to opt into the relative finder program. I think they're trying to protect people from themselves. They believe in the power of information and of learning about yourself. Some people can't handle the information. Some people don't even know they can't handle it.
“When you check that [close relatives] box it should have a bunch of stars and bells and whistles around it. Because there are plenty of people who click boxes. Nobody reads their iTunes agreement. That’s how I feel about the family finder thing: you just check all the boxes, just keep doing it, and never put a whole lot of thought into the possibilities.
“I would want a warning saying, ‘Check this box and FYI: people discover their parents aren’t their parents, they have siblings they didn’t know about. If you check this box, these are the things you’ll find.’ And I’m the one with my PhD. I understand how this works. But I didn’t think through all of the practical implications, in part because I thought, ‘This wouldn’t happen to me.’”

Vox’s report hit 23andMe hard. The company reversed its move to make identification of close relatives an opt-out decision. From now on customers will have to make a clear decision to see whether they have relatives. 23andMe has also hired a Chief Privacy Officer to deal with such issues. 

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  12:11:00 AM

When doctors suffer from VIP syndrome

The unexpected death of American comedienne Joan Rivers after a routine procedure in a Manhattan endoscopy clinic may have been an example of the baneful effects of the “VIP syndrome”, according to the New York Times. The phrase was coined in 1964 by a psychiatrist, Dr Walter Weintraub. “The treatment of an influential man can be extremely hazardous for both patient and doctor,” he wrote.

For physicians, “The VIP, cursed with the touch of Midas, arouses only resentment and fear.” They regard these patients as demanding and manipulative and to resent them for it, which can diminish the quality of their care. But for hospital administrators, “The VIP is more than just a patient. He is also an object to be bartered for future favors.”

The most famous victim of the VIP syndrome may have been entertainer Michael Jackson, who died after his personal physician gave him a surgical anaesthetic to help him sleep. The doctor was convicted of involuntary manslaughter and was sentenced to four years in prison.

Doctors can also become overly deferential, which may affect their clinical judgement. They may settle for a conventional treatment so that they cannot be accused of reckless treatment if something goes wrong. “Often with VIP patients, doctors won’t say, ‘Joe Famous Person, look, you have to take your medicine or you have to come in for surgery immediately,’” bioethicist Robert Klitzman, of Columbia University, told the Times.

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  12:01:00 AM

US doctors update gamete donation guidelines

After five years the American Society for Reproductive Medicine has updated its guidelines for gamete donation in the light of the growing recognition that offspring may have a right to know their genetic parents.

The thread running through all sections of the lengthy “opinion” is uncertainty. Until now almost all gamete donation was anonymous. However, offspring who want to find their parents and donors who want to become involved in the lives of their children are becoming more and more common.

In some countries, such as the United Kingdom, children can access donor information once they turn 18. This is not the case in the US, but laws could change. “Programs should make it clear to donors that they cannot give guarantees regarding immunity from future contact by offspring,” the ASRM says. Perhaps as a consequence, it offers no firm recommendations which are binding on its members.

“Donors and programs must recognize that they have a unique and ongoing moral relationship with each other, as well as with the recipients and their children, and this obligation does not end with the procurement of gametes. Evolving medical technology, laws, and social standards will require reevaluation of these relationships throughout the lifetime of the parties involved.”
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  11:51:00 PM

Debate over history of US Christian bioethics

One of the puzzling features of the history of bioethics – which is now nearly 50 years old – is that its “founders” were nearly all Christians, but Christian bioethics has become a marginal interest, at least in the US. How did this happen?

The conventional account is that initially Christian bioethicists like Joseph Fletcher and Paul Ramsey (both Protestants) or Richard McCormick (a Catholic) were quite influential in shaping bioethics debates in the 1960s, serving on national committees and helping to draft government reports. However, as society became more secular, they were shouldered aside and their contributions were ignored.

In a provocative article in the journal Christian Bioethics, Tristram Engelhardt, Jr offers a very different interpretation. Engelhardt is a heavyweight in American bioethics – one of the few Christians with clout. He originally delivered this article on the occasion of receiving a Lifetime Achievement Award from the American Society for Bioethics and Humanities.

Engelhardt, a convert to Eastern Orthodoxy, attributes the marginalisation of “Christian bioethics” to the treason of Christian bioethicists. They capitulated to pressure from an increasingly non-religious environment and betrayed their Christian heritage.

“The result was that a view of Christian morality developed that eschewed a defining Christian content for Christian morality  and Christian bioethics. Scholars rejected the position that there could be moral content in a Christian bioethics not accessible  to a secular bioethics. This meant that there could not be a distinctly Christian bioethics.”

What about powerful messages from the Catholic world, particularly the recent Popes? Engelhardt claims that they too abandoned a distinctively Christian outlook and relied far too much on philosophy:

“Neither John Paul II nor Benedict XVI adequately appreciated that what had occurred was, at least in part, a function of  post-Vatican II Roman Catholicism’s attempt to speak and think in a secular or philosophical idiom open to all. Among other  things, this focus on philosophy raised the question as to why one should pay attention to the philosophical arguments of  theologians, who wrote as want-to-be moral philosophers, when the same philosophical arguments were often (usually) made more  clear and better by philosophers.”

Engelhardt insists that “Christian bioethics  is radically different from secular bioethics”.

However, in the same issue of the journal a Catholic bioethicist, Daniel P. Sulmasy, rebuts Engelhardt’s bleak view. In his opinion Engelhardt is reviving an older debate between Protestants and Catholics about the relationship between grace and reason, or between faith and natural law. Protestants tend to be suspicious of reason as a means for reaching the truth while Catholics see faith and reason as the two wings of truth.

“A more reasonable reading of the history of bioethics is that proponents of natural law like McCormick and Ramsey were eventually rejected by a progressively secularizing bioethics that came to view the method they employed, natural law, as inherently religious (specifically, Christian) and therefore suspect in an officially secular bioethics … Although their method did not appeal to explicitly religious sources of argument, their conclusions were always compatible with their religious commitments, so their views (and those of Christian bioethicists who followed them) were dismissed as inherently religious and therefore, to a secular world, suspect.”
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  11:31:00 PM

A more elegant solution

An elderly Belgian man and wife are preparing to be euthanized together. François, 89, and Anne, 86, from Brussels, fear being lonely if one of them dies first. They are not terminally ill although Francis has been treated for prostate cancer for 20 years and needs morphine to cope with his pain and Anne is partially blind and almost totally deaf.

“We want to go together because we both fear of the future,” Francis told a Moustique, a Belgian newspaper in an extended interview. “It's as simple as this: we are afraid of what lies ahead. Fear of being alone and above all, fear of the consequences of loneliness.”

The couple had made plans to commit suicide together by placing plastic bags over their heads. But their children opposed this, saying that there must be a more elegant solution.

The couple’s three adult children support their parents’ decision and their 55-year-old son John Paul even arranged it for them. They found it difficult to organise a joint euthanasia in the French-speaking part of Belgium. The couple’s own doctor refused to grant his request on their behalf, saying, “I have taken the Hippocratic oath; I give life, not death."

But when they contacted a right-to-die organisation in Flanders, the Dutch-speaking part of Belgium, they received an altogether different reception. “A friendly voice, warm, told me they could help us,” John Paul said. "’Yes, what you ask might be possible. Yes, this is a normal question. And yes, they could go together’. Later, I read somewhere the numbers: 82% of euthanasia cases in Belgium are in Flanders, 18% in Wallonia. This is revealing.”

“Fortunately, we have our son,” said François. “Without him, we would have left life as we had intended to start: with a plastic bag.”

“It takes courage to jump from the 20th floor and I am unable even if I wanted to do it,” said François. “It takes courage to hang, it takes courage to jump into the canal. But a doctor who makes you a shot and lets you gently fall asleep? It does not take courage.”

 “If one of them should die, who would remain would be so sad and totally dependent on us,” said John Paul. “It would be impossible for us to come here every day, take care of our father or our mother.”

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  11:00:00 PM

Belgium grants prisoner’s request for euthanasia

Frank Van Den Bleeken  

A man serving a life sentence for rape and murder has been allowed by a Belgian court to undergo euthanasia. Claiming that he is unable to control his violent sexual urges, Frank Van Den Bleeken, who is 50, wants to die. He says that he is suffering “unbearable psychological anguish”. "He has clearly said that he didn't want to leave prison because he didn't want to risk creating further victims," his lawyer told AP.

Van Den Bleeken has been battling for permission in the courts for three years. This decision will make him the first prisoner to be euthanased since it became legal in 2002. He will be transferred to a hospital where the medical procedure will take place. The exact date is yet to be determined. Since applying for euthanasia prison authorities have placed him on suicide watch.

Van Den Bleeken’s case has raised a number of issues.

Is he terminally ill? Clearly not. However, he does claim to be suffering unbearable anguish, which is grounds for euthanasia in Belgium.

Can he be cured? We don’t know because the Belgian government has effectively refused to treat him. Belgium has been repeatedly condemned by the European Court of Human Rights because it cannot offer high-risk sex offenders humane care.

He had requested a transfer to a specialised psychiatric centre in neighbouring Netherlands but Belgian authorities denied the transfer request earlier this year. After that Van Den Bleeken requested euthanasia. Even Belgium’s leading figure in euthanasia, Dr Wim Distlemans feels a bit queasy about this. He said: "Surely, we are not going to carry out euthanasia because we can't offer an alternative?"

Should he be allowed to “escape” a life sentence? “I’m a danger to society,” he told state broadcaster VRT in a documentary earlier this year. “What am I supposed to do? What’s the point in sitting here until the end of time and rotting away? I’d rather be euthanised.” However, the sisters of one of his victims, whom he raped and killed while on parole, insist that justice demands that he “rot” in jail. “We hear his lawyers say on the radio how much their client suffers. Well, we’re suffering too! It’s always the same!’,” one of them said.

Is Belgium still opposed to the death penalty which it abolished in 1996? The Van Den Bleeken case muddles the meaning of capital punishment. Is he being killed because he made his victims suffer or because his victims are making him suffer?

Will this change the meaning of imprisonment? The Belgian media has reported that 15 other prisoners have already requested euthanasia. Some euthanasia supporters will welcome this development. Australian activist Dr Philip Nitschke mooted voluntary euthanasia as "the last frontier in prison reform" in his 2005 book Killing Me Softly. Why should jails try to prevent prisoners from committing suicide, if they can request to be killed?

Can any prisoner’s request for euthanasia truly be voluntary? If Belgium refused to provide Van Den Bleeken with the psychiatric help he needs to overcome his urges, can his desperate plea be deemed “voluntary [and] well-considered” and “not the result of any external pressure”, as the euthanasia law stipulates?

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  10:00:00 PM

On the front lines of the war on Ebola

Three thousand US military and healthcare workers are being sent to West Africa to fight the Ebola outbreak there in an operation which could cost US$500 million. The Americans will train local healthcare workers, build clinics and distribute supplies. 

"Faced with this outbreak, the world is looking to the United States and it is a responsibility we are prepared to embrace. We are prepared to take leadership on this," said President Barack Obama. "This is an epidemic that is not just a threat to regional security, it’s a potential threat to global security if these countries break down, if their economies break down and people panic."

The head of the World Health Organization, Dr Margaret Chan, is describing the epidemic in frightening terms: “None of us experienced in containing outbreaks has ever seen, in our lifetimes, an emergency on this scale, with this degree of suffering and with this magnitude of cascading consequences.”

She says that reports that 5,500 people have been infected more than 2,500 killed by it are “vast underestimates”.

It takes courage to stand in the front lines. Cokie van der Velde, a British sanitation specialist with Medecins Sans Frontieres/Doctors Without Borders, comes from Yorkshire. She spoke with the BBC about her responsibilities in Sierra Leone. The work is not only dangerous; it is exhausting and often repugnant.

In the centre, people groan and cry out - the smell of blood, diarrhoea and vomit is awful - unfortunately there is also a very pervading smell of dead bodies.

I can only leave it to your imagination to understand what a pile of bodies smells like after a week in very hot, moist surroundings - it makes you feel sick quite a lot of the time.

Nobody else has been near them for days. They must feel very lonely and very frightened.

I am responsible for infection control which means that my first job is to ensure the safety of the people I work with and of myself. We have to wear our scrubs, then two or three pairs of gloves, a completely waterproof suit and a head covering, a mask, goggles and a big apron over the top.

It's incredibly hot and humid - when you undress back to the scrubs afterwards it looks like someone has just poured a bucket of water over you.

I try to go round the patients and help where I can and give them some water. I'll change and wash patients and just try and give some physical contact to each person because nobody else will touch them, nobody else has been near them for days. They must feel very lonely and very frightened.

I don't know how much comfort I am bringing to people when I'm dressed in a mask and goggles and completely covered from head to foot. If we have children at the treatment centre, which we quite often do, I'll try to bring them some toys and have a little game with them if I can …

There is always an element of risk when I work for MSF - I could be caught in crossfire, I could always pick up a nasty disease and there's the small chance of kidnap. And normally I would put that risk at about one in 1,000. So it's not that high. But I must admit, when I sat down and thought about it, I would say the risk for me now is about one in 10 …

I go partly because of my belief that there should be social justice in the world - that there should be some sort of equality. The people I'm helping are part of the human race, part of humanity - in that respect, all people for me are the same. I feel I have as much obligation to help a stranger as I do to help someone I know.

That last time I was in Liberia I must have moved hundreds of bodies but only three people survived during the month that I was there. I don't think you can see that many bodies without viewing death in a different way.

I try to always make sure that the team I'm working with stops for a moment to say goodbye to the person before we put them in the body bag. We still try to keep a reverence for the dead. Even though I'm not religious, I hope I can bring some sort of spirituality to that moment and some respect to the grieving of the relatives.  

The disease is not the only danger. One team of eight Ebola educators, including three journalists, in a remote part of southeastern Guinea has been killed, presumably because people feared that they were actually spreading the disease. Their bodies were dumped in a village latrine. 

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  9:00:00 PM

Ground shifts in UK debate over “three-parent embryos”

Is UK’s battle over “three-parent embryos”, as it is called in the media, or mitochondrial transfer, as it is called in the journals, becoming more transparent? Until now the government has dismissed concerns about replacing the 37 mitochondrial genes in an egg carrying mitochondrial disease with the genes from a healthy egg.

Earlier this year the Department of Health framed the issue in the following way in a consultation on draft regulations:

“Mitochondrial DNA comprises a very small proportion of total DNA (0.1% – only 37 of 20,000–30,000 genes)… It is generally agreed by scientists that it is genes in our nuclear DNA, together with environmental factors, rather than mitochondrial DNA, that shape our personal characteristics and traits.”

This approach was echoed in the media. In a typical example, New Scientist declared flatly last year:

“So what about the ‘three-parent’ issue? It is of questionable relevance. Mitochondria contain genes but make no contribution to the traits that make us human – personality, intelligence, appearance and so on. A donor would have no more right to claim parenthood than someone who gives blood. In any case, the precedent set by ooplasmic transfer suggests that the issue has no practical significance.”

Now, however, New Scientist has done a 180-degree turn on the issue because of some recent findings:

“Now it appears that we may have seriously underestimated the influence that mitochondria have. Recent research suggests that they play a key role in some of the most important features of human life. This raises the ethically troubling prospect – once widely dismissed, including by this publication – that children conceived in this way will inherit vital traits from three parents.”

The magazine’s editorial says that “a serious debate about the ethics” is  needed before the mitochondrial transfer can be approved by Parliament.

And writing in BioNews, Ted Morrow, of the University of Sussex, complained that politicians and the press fail to understand the complexity of genetics. He pointed out an obvious inconsistency in the notion that mitochondrial DNA is unimportant:

“It is therefore a contradiction to claim that mtDNA is not important for an individual's characteristics (scientists call this the phenotype) while at the same time acknowledging that changes in the mitochondrial genetic code are important for an individual's risk of disease (again part of an individual's phenotype).”
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