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September
20
  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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September
20
  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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September
20
  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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September
20
  8:45:00 PM

Enhancing the chemistry of love

It works on prairie voles

Julian Savulescu and two of his colleagues at Oxford University in the UK, Brian D. Earp and Anders Sandberg, have made a case for latter-day love potions in the Cambridge Quarterly of Healthcare Ethics. Neuroscience research, they say, has shown that love is essentially “an emergent property of a cocktail of ancient neuropeptides and neurotransmitters”. If this is the case, drugs could be used to enhance or diminish romantic relationships.

One promising candidate as a love-potion is the hormone oxytocin. When injected into the brain of a small North American mammal called a prairie vole, they form lifelong pair bonds. When an oxytocin blocker is injected, voles split up and look for new sexual partners. Savulescu et al have been heartened by this experience.

“While ‘love’ is not simply reducible to these brain chemicals or pathways,” they write, “what it is clear by now that these underlying phenomena do much to shape (as well as to respond to) our higher-order romantic experiences, across a wide range of theoretical conceptions.”

It is not wrong to “medicalise” love, they argue.

“If we are prepared to agree that relationship counseling is, or can be, an acceptable form of medicalization—and that insights gleaned from the “scientific” study of factors that promote, or detract from, relationship health and functioning can reasonably be applied in such settings —then it would seem to be important to determine whether (or to what extent) the additional, adjunctive use of a bond-enhancing neurochemical substance would alter the underlying moral equation. Such a substance would not work to create love “magically,” of course, but it might certainly help it along by acting on the underlying substrates of attachment, or by promoting more empathic states of mind.”

Savulescu’s ideas have provoked much comment among bioethicists. In this article they list and refute five common reservations that people have when they are confronted with the idea of love enhancement.

One of the strongest is that the love would not be “authentic”. People who used drugs to bewitch a partner – or to allow themselves to be bewitched – would need a  crutch to participate in the most important dimension of their lives. But Savulescu et al dismiss this. “If the administration of certain love drugs turns out to be effective in promoting states of mind and behavioural dispositions that are conducive to a healthy relationship, then couples may simply have an additional tool at hand to help them pursue their higher-order inter-personal aims.”

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September
20
  8:15:00 PM

Probe into death of Joan Rivers

As more details of the death of American comedienne Joan Rivers come to light, her doctor’s behaviour is being questioned. The 81-year-old Ms Rivers died after a cardiac arrest during a routine endoscopy at Yorkville Endoscopy clinic in Manhattan. She was being investigated for a sore throat and hoarse voice.

The clinic issued a soothing statement to the press after the death about the kind of anaesthesia it used and the high quality of its care.

CNN alleges that the comedian’s personal doctor, Gwen Korovin, took a selfie while her patient was sedated and also, without her consent, took a biopsy of her vocal cords. "Even though you are a licensed physician, you still should have, if you will, the checks and balances to get your approval to practice in that particular place," said bioethicist Arthur Caplan, of New York University's Langone Medical Center. CNN says that Dr Korovin, a respected otolaryngologist, has denied taking a selfie with her cell phone.

The American Association for Accreditation of Ambulatory Surgery has placed the clinic on "emergency suspension." and asked it stop procedures and surgeries "until accreditation questions are settled."

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September
20
  8:00:00 PM

Interview: the global trade in reproduction

Dr Carmel Shalev, of Israel’s Haifa University, is organising a session on helpful and harmful practices in the ethics and regulation of inter-country medically assisted reproduction in Jerusalem in January. It will be part of the 10th World Conference on Bioethics, Medical Ethics and Health Law.

BioEdge: “inter-country medically assisted reproduction” – do you basically mean a market for surrogate mothers and babies? 

Shalev: Yes, that’s a major concern, but not the only one. For example, there is also a market in inter-country egg donations. The problem is that there have been too many cases of harm to children and to the third-party women who agree to take part in reproductive collaborations for the benefit of others, as genetic mothers (egg providers) and birth mothers (surrogate mothers).

What are the “products” in the market?  

The products in surrogacy are children. In other practices the products are human gametes (eggs and sperm) and embryos (fertilised eggs). Unfortunately, women are being used as a means of production, and objectified in the process.

How much has the market for surrogacy grown over the past 20 years? 10 years? Can you put a dollar figure on it? 

Inter-country surrogacy has been going on for about 10 years. Transnational practices involving egg donations have been around for a little longer. It’s difficult to put numbers to a market that is private and unregulated, but estimates indicate that the size of the industry (including other repro-genetic practices such as IVF for sex selection) is in the range of billions of dollars. We know the market is growing rapidly, even in those countries where surrogacy is allowed and regulated. In Israel, for example, fewer than 100 children are born each year from local surrogacy agreements, while in 2012 there were approximately 130 cases of requests to register the births of children born of inter-country surrogacy.

What is pushing it? Women delaying motherhood until it is too late? Gay couples who want kids?

The demand of prospective parents is related to changing social norms about family, combined with innovations in assisted reproductive technology (ART). Gay couples want to have families, and single women want to become mothers but often need egg donations, in addition to sperm, to get pregnant. The desire of individuals and couples who want children and can’t have them without medical assistance translates into a right to parenthood.

But the demand for access to ART also reflects a consumerist culture. Legal restrictions in countries of demand are one incentive to seek medical care abroad. Global economic disparities mean that services provided in lower income countries are far less costly, and that too is an incentive.

Finally, the market is driven by sometimes unscrupulous medical entrepreneurs and intermediary agents, who capitalize for personal profit on consumer desire, and on the ignorance and vulnerability of all those involved.

India and Thailand used to be the main destinations for people looking for surrogate mothers. Now that they have more or less shut the doors to foreigners, how will the market adjust? 

Hopefully, the market will shrink, but it might well go underground, which would increase the risks. And it appears that new markets might be opening in Central and South America. The global ART market is similar in some ways to the global arena of organ transplantation, although the latter is relatively well regulated under international law and convention. Illicit organ transplantation practices are called “trafficking” and are punishable.

Nonetheless organ trafficking continues, and intermediaries are ingenuous in shifting locations to circumvent legal changes. This is evident, too, in inter-country surrogacy. For example, women who become pregnant in a surrogacy collaboration can be transferred across borders to give birth, if surrogacy is no longer allowed in their countries of residence. So long as medical practices are unregulated, the birth of a child is the most concrete evidence. All the stages that precede birth (throughout the process of conception, impregnation, gestation) can go undetected. That is why we know far less about inter-country egg donation that we do about surrogacy.

What are a few of the helpful and harmful practices to be canvassed in the conference? 

Lessons learned from experience with local surrogacy can inform a model for inter-country reproductive collaborations, based on an ethic of care and responsibility, and values of respect, reciprocity and integrity.

Unfortunately, in some extreme cases, the current situation has incurred grave violations of the human dignity and rights of women and children. Abuses include the fraudulent use of surrogacy to create and sell babies. In other cases, new-born infants have been rendered parentless and stateless.

As for the women, double standards of care for invasive medical interventions have carried health harms, including collateral infertility. Medical procedures often involve violations of bodily integrity and patient autonomy – eg, in relation to multiple-embryo implantations, pregnancy terminations and C-section deliveries.

In some cases, intermediaries advertise the possibility of parallel pregnancies. This means, that if there are more pregnancies than the desired number of children, the surplus ones are terminated, and the pregnant woman is led to believe falsely that there was something wrong with the fetus. In other cases, women have been deprived of their liberty and confined for the duration of their pregnancy in controlled housing with 24/7 surveillance. A general concern is the invisibility of the third-party women, which creates conditions that are conducive to dehumanisation and exploitation. I think it’s really important that these women have faces, that they be seen as playing a role in a relationship. It’s also important to preserve information, so that children can know the circumstances of their birth.

What outcomes would you like to see?

We want to provide a forum for people to share what they know about inter-country reproductive collaborations, what works and what doesn’t, to discuss views on how best to address matters of concern, and to join a process which has as its long-term aim the adoption of an international code of ethics and human rights convention.

All welcome? 

Absolutely.

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September
20
  7:00:00 PM

Remember Savita?

A new style of journalism has emerged in the UK: slow journalism. “Because today's ultra-fast news cycle rates being first above being right. It tells us what's happening in real time, but rarely what it means,” says the website for its flagship magazine, Delayed Gratification. Perhaps one of its writers should revisit the death of Savita Halappanavar in Ireland in 2012.

Mrs Halappanavar was an Indian dentist who began to miscarry her first child. Thinking that the child was dead, she asked for an abortion. The staff at Galway University Hospital refused and she died of a massive infection. The world media went wild: “Ireland's law and Catholic culture allowed Savita Halappanavar to die” was the headline in the normally sober UK magazine, New Statesman. The next year Ireland relaxed its strict laws on abortion.

However, a report released last week by Ireland’s  Health Information and Quality Authority shows that Savita’s death had nothing to do with the abortion law. It was caused by incompetence

“The findings of this investigation reflect a failure in the provision of the most basic elements of patient care to Savita Halappanavar and also the failure to recognise and act upon signs of her clinical deterioration in a timely and appropriate manner. The Authority identified, through a review of Savita Halappanavar’s healthcare record, a number of missed opportunities which, had they been identified and acted upon, may have potentially changed the outcome of her care.”

As a result 9 members of the medical team involved in Savita’s treatment have been disciplined.

However, compared to the blanket coverage of the woman’s death, almost nothing has appeared in the media. Opponents of abortion in Ireland are incensed. “Those who pushed the distorted version of the story hardest from the start have never bothered to set the record straight in light of all the reports that have contradicted their initial presentation of the case,” said Cora Sherlock, a solicitor and deputy chairman of Prolife Campaign. “These journalists and politicians were happy to hard wire a false account of what happened into people’s minds and to this day they have no intention of disturbing their original narrative.”

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September
13
  12:03:00 AM

Defending human dignity

English barrister and medical ethicist Charles Foster has penned defence of “human dignity” as the foundation of bioethics in the Cambridge Quarterly of Healthcare Ethics. He believes that it is more adequate than the reigning view that autonomy is its fundamental principle. In particular dignity does a far better job of explaining why body parts or patients in a vegetative state deserve respect.

Foster is well aware that the concept of dignity has weaknesses:

 Dignity has a smug tendency to rest on its laurels. Its advocates have often responded to criticism of the use of dignity by philosophical name-calling—along the lines of “You don’t like dignity, and therefore you must be a Nazi/communist/utilitarian/shallow reductionist.” That’s not argument. It rightly produces derision from the dignity deniers. They tend to respond in kind, saying words to the effect of “You’re a credulous, theologically contaminated mystic.” And so it goes on. A lot of the literature on dignity is comprised of these sorts of exchanges. It is not amusing for long, and not productive at all.

However, autonomy is “hardly more satisfactory and less question-begging”. In particular, it fails to take into account the web of relationships in which we all exist.

What is dignity? “Dignity is about being human well. A dignity-enhancing measure is a humanizing measure. There are things that are objectively humanizing and things that are not.” Good things include health and companionship; bad things include isolation and arsenic.

Even if human dignity sounds airy-fairy to those of a utilitarian cast of mind, Foster points out that it has already been enshrined in law in the European Convention on Human Rights:

Article 8(1) provides that “(1) everyone has the right to respect for his private and family life, his home and his correspondence.” But this right is not absolute. …
It is now clear that Article 8 is the natural home of dignity. It is a rather tense home. The space is shared with autonomy, and there are sometimes silent, icy breakfasts and sometimes shouting matches. Also the landlords (the Strasbourg court) won’t leave the place alone. They are always redecorating and adding on extensions. But there is no danger of dignity being ousted. Indeed, it now holds, with autonomy, a perpetual joint tenancy. It used to have a bare license, and autonomy kept it in a shabby spare room. Dignity is here to stay, and its main address is Article 8.

Foster is clever debater and stylish writer (unlike most bioethicists). This is an essay which is well worth reading as a defence of an often maligned concept. 

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September
12
  10:10:00 PM

Ebola in West Africa: the stakes rise

Wrapped into US President Barack Obama’s speech on the threat posed by ISIS in the Middle East was a commitment to send the US Army to West Africa to contain the Ebola epidemic. “It is America – our scientists, our doctors, our know-how – that can help contain and cure the outbreak of Ebola,” he said.

The haemorrhagic fever, which has a fatality rate of between 50 and 90%, has spread from Guinea to Sierra Leone, Liberia, Democratic Republic of Congo and Nigeria. Over 2,000 people have died already and some experts believe that this could increase exponentially.

"The US Military is uniquely poised to help with this disease," says Timothy Flanigan, an infectious disease researcher at Brown University, told NPR from Monrovia. "We've trained for it, we've got the logistics, we've got the support and we have the matériel."

However, Obama has only allocated US$88 million for the mission --  $58 million for production, development and research of Ebola therapies, and $30 million to the Centers for Disease Control and Prevention helping on the ground in Africa. How far will $30 million go?

Dr Flanigan was disheartened by the response. The military is planning to send only a $22 million, 25-bed field hospital.  “It's not going to make any dent in Ebola treatment for the people of Liberia,” he says. “It's such a small number of beds and they may well be directed toward non-Liberians."

Furthermore, containing the epidemic and treating the sick is immensely labour-intensive. The World Health Organization estimates that about 760 foreign volunteers will be needed over the next six months, when the epidemic may begin to wane. Another 12,900 workers must be recruited from the affected countries. It takes about 200 to 250 healthcare workers to treat for 80 Ebola patients at one centre. The ratio is so high partly because people can only work in the protective suits for an hour.

As Roll Call, a US politics site, put it, “the worst epidemic in the four-decade recorded history of the disease has made the challenge one of manpower rather than financial resources.”

Médecins Sans Frontières (Doctors Without Borders) is advertising frantically for international volunteers, in addition to the 210 it has already deployed. The US government’s response will help, says its spokesman, Jason Cone, but more is needed. Some health workers in the affected countries refuse to work unless they receive protective gear and their salaries.

Some experts are very pessimistic. Jonas Schmidt-Chanasit, of the Bernhard Nocht Institute for Tropical Medicine in Hamburg, told Deutsche Welle that the battle has already been lost in Liberia and Sierra Leone. He believes that the epidemic will burn itself out by infecting more or less everyone and half the population will die. (The WHO refused to comment on this.)

Given the scale of the problem, there is no possibility whatsoever of defeating this epidemic with drugs. Hence bioethical commentary on the issue has shifted away from the ethics of the “compassionate use” of experimental drugs to public health issues.

The observations of Udo Schuklenk, the Canada-based editor of Bioethics and Developing World Bioethics, about his colleagues were scathing:

“Did we stress that WHO’s choice of topic and the supposed urgency of its recommendation to provide access to experimental agents in Ebola regions amounted to pointless grandstanding in the face of a pandemic that requires a public health response, and not the tinkering with experimental agents? Some of us did, but it didn’t stop most of us from entertaining questions on the ethics of who should get experimental agents, whether it was ok that white religious activists with a health care background were prioritized over local dying health workers, and other reportedly important questions. In the rush to be seen to do something the WHO managed to convene said meeting without a single representative from a country affected directly by Ebola.”
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September
12
  10:00:00 PM

The ethics of running scared

It’s all very well to sit in an armchair and bloviate about Ebola. If you are a doctor or a nurse or a hospital cleaner with a dying patient in the next room, it is an altogether different question. If you help the poor soul, you and your family could die.

As one Liberian nurse told Associated Press, “We are not equipped to face the situation ... When you go through this and return home, you lie in bed asking yourself: I am still safe? Or I have contracted the disease?”

An article in the Journal of Medical Ethics by four Nigerians and two Americans argues that healthcare workers are not obliged to risk their lives if their government cannot provide adequate safeguards.

“In the absence of clear guidance, healthcare workers face a moral dilemma. Their conscience urges them to treat all patients, but a convergence of failed health system factors, the danger to life, emotional considerations like danger posed to family and friends, and the absence of commensurate compensation for engaging in such high risk service can make following one's conscience costly.”

Traditionally, public health ethics has focused on the rights of the public. But the authors point out that healthcare workers have also have a right to be protected. If the government is incapable of keeping htem safe, there is not unconditional obligation to give care.  

“Requiring healthcare workers to provide care to patients with EVD puts undue burden on them. Since the principle of justice requires fair distribution of benefits and risks, it is only fair that affected countries make arrangements to adequately compensate healthcare workers who become infected in the course of duty.”
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Belgium grants prisoner’s request for euthanasia
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Ground shifts in UK debate over “three-parent embryos”
20 Sep 2014
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20 Sep 2014
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