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  2:39:00 PM

Ethical issues multiply for Ebola

Volunteers! Volunteers! World Bank president Jim Yong Kim has appealed for thousands of volunteer medical workers to fight the epidemic in West Africa. Many were too frightened, he said. "Right now, I'm very much worried about where we will find those healthcare workers. With the fear factor going out of control in so many places, I hope healthcare professionals will understand that when they took their oath to become a health care worker it was precisely for moments like this," he added.

Do doctors have a duty to help? Yes, because medicine is a vocation, says Professor Stephen G. Post, of Stony Brook University School of Medicine. “So do professionals have a duty to treat Ebola patients? I say yes for physicians and nurses who are infectious disease specialists so long as they have ample experience. They accepted their duty when they chose their specialty,

Patient privacy. Ethically and legally information about patients’ health care information is supposed to be kept confidential. The Ebola epidemic is testing this, with patients’ names, photographs, diagnosis and family details being broadcast in government press releases and the media. “Ebola hysteria raises questions not only about how to contain the disease, but also to what extent Americans value their healthcare privacy.  What liberties are Americans willing to sacrifice to calm their fears?  How to balance the concern for public welfare with legal and ethical privacy principles?” writes Michele Goodwin in Harvard Law School’s Bill of Health blog.

Unbalanced reporting. “Why does the US media obsess over public health matters that pose modest risk here, yet ignore much greater risks?” asks Kayhan Parsi, of the Neiswanger Institute for Bioethics in Chicago,  at the blog. “We engage in this almost ritualistic media dance every few years when a potentially harmful, even lethal, contagion is constantly reported by the media.” In an interview in Science Belgian microbiologist Peter Piot, who helped to identify the Ebola virus in 1976 was scathing. “I've often said that journalists can save more lives than doctors, by giving the right information. But when I see that media reports are more about the dog of the nurse than about Ebola itself, that tells a story.”

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  2:28:00 PM

Surrogacy and citizenship

All three of Tony Jiang's children were born to an American surrogate. He now runs a surrogacy agency. 

The US Department of Homeland Security may have opened the door for American surrogate mothers to ‘sell’ citizenship to parents from foreign countries.

The transmission of citizenship from mother to child was until recently restricted to genetic parents alone, under the Immigration and Nationality Act. But a new immigration policy statement broadens the definition of ‘mother’ and ‘parent’ to include gestational mothers as well. One now only need only be a surrogate mother and legal parent at the time of birth to pass on citizenship.

As bioethics commentator Wesley Smith points out, this might lead to foreign surrogacy schemes whereby American surrogate mothers ‘sell’ American citizenship to couples:

“A woman who is a U.S. citizen can be hired by a reproductive medical clinic to become pregnant overseas and to give birth in China, Saudi Arabia, or anywhere else, and then effectively hand a U.S. passport to the baby.”

The policy change is intended to redress a surrogacy law loophole that has left some children of American parents stateless in other countries at the time of birth.

But it seems the amendments could inadvertently have negative consequences as well. Smith continues: “the contracts will just provide that the waiver of parenthood occur after birth, and voila, instant citizenship. For sale. Unbelievable.”

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  1:56:00 PM

Over-50s are major clients of Indian IVF

75-year-old Rajo Devi with her 5-year-old daughter Naveen   

In New York IVF clinics, older clients are 40; in India, they are 60 or even 70. Taking advantage of the desperation that couples in rural India feel to produce a male heir, IVF clinics place no age limit on treatment. "Come alone. Leave as a family. Age no bar,” is the slogan used by the clinics.

The BBC recently highlighted 75-year-old Rajo Devi, who gave birth to a daughter 5 years ago after IVF in a clinic in the northern state of Harayana. Her  husband was so keen to have a son who could inherit his prosperous small farm that after 15 childless years, he married Rajo’s younger sister. But she did not produce a child either. Then they heard about IVF.

"If we were to die without an heir, all our assets would be usurped by my brothers or neighbours," says the husband Balo Ram. Unfortunately the child was a girl, but there were no second chances. Rajo was now too frail to try again.

Dr Anurag Bishnoi told the BBC that he runs a clinic in Haryana which treats about 1,000 women every year - "a third are aged between 50 and 70 years".

"There was a time when I was treating more than 100 old couples in a month, and they came with such high hopes, all of which we evidently could not fulfil. So we had to carefully select and cut down on the number of patients we were taking in," he says

The website of the National Fertility Centre, an IVF clinic in rural Harayana, has a gallery of photographs of white-haired couples cradling their first-born child. “Mother at 70, 75-year-old senior citizen gets heir, After 55 years of marriage, After 50 years of marriage, After 45 years of marriage” read the captions.

Dr Malpani, of the Malpani Infertility Clinic, in Mumbai, sums up the argument for senior citizen IVF:

“Are we being ageist by not allowing older women to use this technique, just because we think it is ‘unnatural’? Isn't it sexist as well ? When a 70 year old man gets a 20 year old woman pregnant, society applauds his virility and manhood ! Why shouldn't we be happy to encourage older women who want to have kids as well ? After all, this is their personal decision, and we should be happy to honour their autonomy. They are not harming anyone and if they are well off enough to afford IVF treatment with their own funds, presumably they are well off to be able to provide for the child's well-being, even after their death.”
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  12:01:00 PM

What does it mean to be dead?

In a controversial Journal of Medical Ethics article in 2012, two prominent ethicists criticised traditional beliefs about the ‘wrongness of killing’. Walter Sinnot-Armstrong and Franklin G. Miller claimed taboos on killing are really about protecting people from the total deprivation of their own human ‘abilities’. We should revise our taboo, they argued, to prohibit the deprivation of abilities, not killing in all circumstances.

In a response to Armstrong and Miller’s article, Adam Omelianchuk of the University of South Carolina has claimed that the authors’ ‘abilities’ approach leaves open the door for unacceptable exploitation of incapacitated human beings. Omelianchuk criticises the authors’ preoccupation with ‘biographical life’, arguing that people even without a continuing ‘biography’ are undoubtedly worthy of certain rights:

“It is plausible to suppose that the right not to be cannibalised is generated by the non-instrumental worth of human life, and that cannibalism would disrespect us regardless of whether or not we are totally disabled.”

Omelianchuk also criticises the vagueness of the notion of ‘total disability’, arguing that it depends upon contingent factors about medical technology and our capacity to address debilitating conditions:

“Consider two people, Smith and Jones, who are in exactly similar comatose states, except that Smith lives in a well-off, technologically advanced society and Jones does not. Through intensive care, Smith’s doctors are able to reverse the effects of the coma, but Jones’s low level of care fails to improve his condition…if Jones were airlifted, he would become a person again”.

According Omelianchuk, there is sufficient justification to assert that personhood is an essential property of one’s humanity:

“In this view, a human being is taken to be an Aristotelian substance which instantiates a property of personhood that survives the loss of a subset of abilities necessary only for the expression of personhood.” 
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  11:54:00 AM

Children born from frozen embryos have superior social skills, say researchers

Children born from frozen embryos are more sociable, self-reliant and better at communicating than naturally conceived children and fresh embryos, claim Chinese scientists. At the annual meeting in Hawaii of the American Society for Reproductive Medicine, Lan Feng Xing, of Zhejiang University, said that these findings should dampen parents’ fears that IVF children will have developmental difficulties.

However, doctors were at a loss to explain how this happens. British IVF specialists observed that IVF parents, who are often older, doted on IVF children. Gynecologist Professor Charles Kingsland told the London Telegraph: “Could it be they are just spoilt?”

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  11:47:00 AM

UK opens national sperm bank

The UK has given a new twist to the one of the oldest arguments for trade protectionism, coddling an infant industry, by launching a national sperm bank. British clinics are currently unable to meet demand for sperm, according to the UK’s fertility watchdog, the Human Fertilisation and Embryology Authority, and sperm imported from Denmark and the US has been rising year after year.

“At present, some patients needing donor sperm are faced with few options and find themselves on waiting lists, having to use unregulated providers or having to stop treatment altogether,” says the HFEA.

Dr Allan Pacey, the chair of the British Fertility Society, told the BBC: "We are importing as a nation more and more sperm from overseas, without being xenophobic it kind of just doesn't feel right, it's a problem that's not going away."

Up to now, British sperm donors tend to be white and UK authorities also want more ethnic diversity. “There will always be some patients who, with regards to sperm donors, will want an individual that is more closely related to them in culture and language and outlook," says Dr Pacey. This is one reason for locating the first branch in multi-cultural Birmingham.

Statistics just released by the HFEA show that 1 in 10 IVF cycles are conducted with donor eggs or donor sperm in the UK. A third of the users of donor sperm were single or lesbian. 

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  11:39:00 AM

Voluntary euthanasia advocate dies in Darwin

Voluntary euthanasia advocate Martin Burgess has died in Darwin, after allegedly being supplied with the barbiturate Nembutal. Burgess, 71, was suffering from rectal cancer and had recently posted a video on YouTube describing his illness. Burgess petitioned viewers to send him a barbiturate with which he could end his life.

Burgess contacted Exit International founder Phillip Nitschke before he died.

"It's a ridiculous situation where someone like Martin, who would have easily qualified for the NT law 18 years ago, and would have been able to go in and get help to die, has had to go through this," Nitschke said. Police are currently investigating the incident, but are yet to confirm the cause of death.

Burgess was a federal candidate for the Voluntary Euthanasia party in the last Australian federal election, and had been a campaigner for euthanasia advocacy group, Exit International, for about 15 years before he was diagnosed with rectal cancer in November 2011. 

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  12:05:00 AM

A sceptical look at synthetic biology

Here's a sceptical look at a controversial subject: synthetic life (or synthetic biology). It's already a multi-billion dollar industry which has immense social and environmental implications. "Governments don’t yet know how to assess synthetically modified organisms for safety and so most are supposedly being kept contained, but now a new wave of SynBio organisms are being developed that are intended for environmental release," says one of the organisers of SynBioWatch, the lobby group which produced the video below: 

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  5:18:00 PM

British right-to-die campaigner starves herself to death

A leading right-to-die campaigner in Britain has starved herself to death. Jean Davies, 86, passed away on October 1, five weeks after she stopped taking food and two weeks after she stopped taking water. She did not have a terminal illness. She was afraid that the other alternative, a drug overdose, would not work and she wanted to die at home, not in Switzerland, where assisted suicide is legal. 

Ms Davies was president of the World Federation of Right to Die Societies from 1990 to 1992 and had been the chair of the Voluntary Euthanasia Society UK (which has been renamed Dignity in Dying).

The process took much longer than she expected. “She hadn’t realised that it would take her so long to die after she stopped drinking,” he daughter told the media. “She thought it might take three days. It took a fortnight.” Before dying her mother gave a long interview to the Sunday Times. “It is hell. I can’t tell you how hard it is,” she complained. “You wouldn’t decide this unless you thought your life was going to be so bad. It is intolerable.”

Why did Ms Davies persevere with her choice? "I think it occurred to her after she started her course of action that it was something which could attract attention," he daughter commented. "She sought publicity after her decision."

Reactions to Ms Davies’s showmanship varied. Dr Peter Saunders, of Care Not Killing, described it as “a subtle form of emotional blackmail aimed at softening opposition to a change in the law to allow assisted suicide or euthanasia.” He went on to say that “There are good reasons for keeping the law as it is. Any change in the law to allow assisted suicide or euthanasia would place pressure on vulnerable people to end their lives for fear of being a financial, emotional or care burden upon others. This would especially affect people who are disabled, elderly, sick or depressed.”

Pavan Dhaliwal, of the British Humanist Association, said it was an “immensely brave decision”. “It is our moral duty as a society to give assistance to mentally competent adults who are suffering incurably, permanently incapacitated, and have made a clear and informed decision to end their life but are unable to do so independently,” she said. 

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  2:56:00 PM

Drug tests in East Germany get “conceded pass”

Respect for informed consent is not regarded as one of the greatest virtues of East German medicine in the 1980s. Elite athletes in East Germany (GDR) were routinely given drugs to enhance their performance, even to the point of endangering their health. With such scandals in mind, no one was surprised when reports surfaced in the German media last year that the GDR had leased out patients as guinea pigs to Western pharmaceutical firms to support its failing health care system.

However, researchers at the Institute for the History and Ethics of Medicine, in Erlangen, Germany, have concluded that these sensational claims were “tendentious” and “distorted”. In an article in the Journal of Medical Ethics they say the GDR attempted to conduct trials according to international ethical standards and that there was no evidence to suggest the trials systematically and intentionally damaged patients.

Nonetheless, the surviving records do not exonerate the GDR authorities. The trials were conducted without the knowledge of the public and although GDR legislation stipulated that patients had to consent to the trials, there is no evidence that patients were systematically informed. Many different drugs were tested, including, chemotherapeutic agents, insulin, heparin, anti-depressants, anti-allergy drugs, toothpastes and cardiovascular drugs.

Some documents suggest that some of the trials were carried out without patients having a comprehensive understanding of what the trial involved. It is also unclear whether the patients knew that they were participating in trials and were aware of all the risks.

But even if the patients did not benefit, the companies and the government did. The companies were able to test new drugs legally, while at the same time opening up new markets in the Eastern Bloc and getting test results faster and more cheaply than they could elsewhere. The government appears to have earned DM16.5 million from 220 trials between 1983 and 1990 involving more than 14,000 patients and 68 Western companies, mainly from West Germany, Austria and Switzerland.

What accounts for the ethical shortcomings of the GDR health system? The researchers say:

“… the GDR ideology required the subordination of the individual to the interests of the collective, a basic precept of Marxism. Therefore, the rights of the individual were not always fully taken into account. This goes against traditional medical ethics where patient autonomy is the primary concern. In the GDR, decisions were often made for purely ideological reasons. State politics followed a socialist collective code of ethics and ethical freedom was non-existent, a fact that even formerly loyal GDR ethicists openly admit today. Medical employees, doctors and scientists were expected to subordinate their interests to prioritise tasks of importance to society. A truly independent medical opinion was not wanted.”
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