June
27
 

The Economist to campaign on Belgian model of euthanasia

 

Editor-in-chief of The Economist, Zanny Minton-Beddoes   

The world’s most influential news magazine, The Economist, has a new editor-in-chief, Zanny Minton-Beddoes, its former business affairs editor. One of the very first issues on which she has chosen to campaign is the legalization of euthanasia. This week's cover story is "The right to die: why assisted suicide should be legal". It is illustrated by a snuffed candle with a smoking wick.  

In a podcast Minton-Beddoes says that there are three reasons for her stand. First, asssisted dying is  one of the great moral questions of our time, especially in the light of ageing populations around the world. Second, it fits neatly into The Economist’s philosophy of promoting autonomy and reducing government meddling. And third, public opinion can truly make a difference.

So, this week's leader (the editorial) contends that while life may be sacred and suffering may confer its own dignity, autonomy is the truest manifestation of human dignity: 

The most determined people do not always choose wisely, no matter how well they are counselled. But it would be wrong to deny everyone the right to assisted death for this reason alone. Competent adults are allowed to make other momentous, irrevocable choices: to undergo a sex change or to have an abortion. People deserve the same control over their own death. Instead of dying in intensive care under bright lights and among strangers, people should be able to end their lives when they are ready, surrounded by those they love.

The headline on the cover is misleading. Minton-Beddoes and The Economist are not merely backing assisted suicide; they are urging readers to accept the boldest scheme on offer: Belgium’s euthanasia for almost anyone who asks for it. No chronic or terminal illness would be required. Mentally ill and depressed patients whould be eligible. Lonely people would be eligible. Children of any age would be eligible with the consent of their parents. In the words of Minto-Beddoes, this constitutes "the maximum respect for individual liberty".

The Economist has a reputation for asking hard questions and for informed commentary based on deep background research. So it is astonishing how readily it has accepted the paternalistic reassurances of doctors in Belgium that its systems function well. It glosses over the issue of "bracket creep" in eligibility for euthanasia and the increasing number of non-voluntary deaths and the substantial proportion which are never reported to the authorities. In mentioning "terminal sedation", it fails to point out that the patient dies of starvation and thirst. It brushes asides fears of disabled people that they will be pressured to die. 

The fifth-wealthiest person in the world, former Oracle CEO Larry Ellison, once remarked, “I used to think. Now, I just read The Economist.” No doubt that was said tongue in cheek, but there is some truth in it. For opponents of euthanasia and assisted suicide, The Economist's campaign sends an ominous message. As intellectual wetnurse to the global elite, it will help to set the agenda on end-of-life issues around the world. 



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June
28
 

Face recognition technology may threaten privacy

Imagine that you are a pastor of an American megachurch. You need to track attendance of your flock for spiritual and financial purposes, but your records are always inaccurate. How about face recognition? Spooky as it sounds, a company called Churchix is marketing software which will track faces in a crowd and add their names to a database.

This is just one of the applications of facial recognition software which has privacy advocates up in arms. “Various applications are traditionally used by security organizations, but in recent years there’s an increasing demand for commercial civic applications,” says one company.

The US government wants to a voluntary, enforceable code of conduct  for commercial purposes, but, according to New Scientist, discussions between privacy advocates and industry representatives broke down almost immediately. They could not agree on the answer to the simple question: “If you are walking down the street, a public street, should a company be able to identify you without your permission?"

One company promises to "boost sales by recognising high-value customers each time they shop" and to send "alerts when known litigious individuals enter any of your locations".

"What facial recognition allows is a world without anonymity," says Bedoya. "You walk into a car dealership and the salesman knows your name and how much you make. That's not a world I want to live in," says Alvaro Bedoya of the Georgetown University Law Centre in Washington DC.

"Companies are already marketing products that will let a stranger point a camera at you and identify you by name and by your dating profile," says Bedoya. "I think most reasonable people would find this appalling."

"This is just the beginning of a very important conversation," Kate Crawford of Microsoft Research told New Scientist. "Facial recognition is one of many remote biometric sensing technologies. There's also gait detection, iris scanning, heartbeat recognition and many others. We need a deeper discussion of the social and ethical implications of these capacities as well as who gets to use them, where and how."



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June
27
 

Dutch paediatricians back euthanasia for under-12s

Dutch paediatricians are backing euthanasia for children aged from 1 to 12. In a position paper released on June 19, the NVK (the Dutch Paediatricians’ Association) recommended that deliberate termination of life be available when palliative care is ineffective.

“We feel that an arbitrary age limit such as 12 should be changed,” said Professor Eduard Verhagen, of Groningen University, a long-time champion of euthanasia for children. “Each child's ability to ask to die should be evaluated on a case-by-case basis.”

Belgium has already removed the age limit on euthanasia and the Netherlands is lagging behind. Under the current rules, children between 12 and 16 must have parental approval, while euthanasia is banned for those under 12 – except for children under 12 months, who can be euthanased involuntarily.

“If a child under 12 satisfies the same conditions, paediatricians are currently powerless. It's time to address this problem,” said Professor Verhagen.

The guidelines suggest that the NVK does not believe that anyone will abuse the proposed protocols. “The NVK considers it a great good that the process of decision-making about the end of life is so careful in our country,” they say. 



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June
27
 

‘I can see what you’re saying’

Researchers in Germany and the US have managed to interpret the brain activity of epilepsy patients, to the extent that they can reconstruct utterances of words and full sentences.

The fascinating findings were outlined in a recent study published in the journal Frontiers of Neuroscience.

Seven US epilepsy patients voluntarily participated in the study, reading aloud sample texts while an electrode array was attached to their cortices, the outer layer of the brain, which had been exposed for epilepsy surgery.

Scientists were able to observe how the brain planned speech acts and then activated the muscles of the speech organs via the neurones in the cortex, a split second before the speech itself became audible.

The patients were given set texts, such as a speech by former US president John F. Kennedy, so the researchers would know which sounds were being uttered and when. They set up databases containing prototypes of around 50 different speech sounds.

Using algorithms from automatic speech recognition, it then became possible to understand what was being said purely from the brainwaves.

“We demonstrated the first passive hybrid Brain Computer Interface for the detection and discrimination of perceptual activity”, the researchers concluded in their study.

The study, though very limited in its scope, is of relevance to the field of to neuroethics. Neuroethics, as Nita Farahany stated in a recent interview with BioEdge, addresses questions about ‘mental privacy’ and, literally, ‘freedom of thought’:

“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”.



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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June
27
 

French senators reject ‘deep sleep’ bill

The French senate has rejected a bill that would legalise ‘deep sedation’ – known as passive euthanasia by critics – of patients with a terminal and incurable illness. 

The bill, passed by a significant majority in the legislative assembly in March, would allow doctors to put patients into an irreversible comatose state and withdraw life-sustaining treatment. The bill goes even further, stipulating that doctors would be obliged to follow end-of-life instructions from patients regarding terminal sedation and stopping treatments if they agree the practices wouldn't improve their condition. 

Unlike the lower house, the senate was overwhelmingly against the bill, voting it down 196-87.

Les Républicains (LR) senators attempted to attenuate the bill (removing the clause “continue until death”) and have it passed, but a majority of left and centrist senators rejected the altered bill.  

It will now return to the legislative assembly for a second reading. Minister of Social Affairs and Health Marisol Touraine said she is hopeful the lower house can draft a more palatable revised bill for the senate. 

“The Senate’s overwhelming rejection is good news for ethical medicine–at least for now”, wrote bioethicist Wesley Smith



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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June
27
 

IVF woes #2: older women

A new study of declining IVF success rates has confirmed the results of previous studies indicating a sharp drop in live births for women in their early 40s. 

The 12-year study, led by Dr Marta Devesa at the Hospital Universitari Quirón-Dexeus in Barcelona, Spain, indicated that the chances of women having a baby through IVF was only 1.3% in those aged 44 and above, but 24% in those aged 38 to 39.

Perhaps more significant, the study found that in a two-year period between 41-43, success rates halved. Among 40 to 41-year-olds the IVF success rate was 15.6%, a number that dropped to 6.6% in those aged 42 and 43.

The results from the large study involving 4,195 women and 5,841 IVF cycles are were presented at the annual meeting of the European Society of Human Reproduction and Embryology (ESHRE).

Reflecting on the results, Dr. Devesa remarked: “women of 44 or older should be fully informed about their real chances of a live birth.”

Professor Adam Balen from the British Fertility Society says the study points to a broader sociological problem:

“It is clear that fertility declines with age as demonstrated in this study of pregnancy rates after IVF treatment. This is not new but a clear message from this and other related studies is that women may not be fully aware of the dramatic decline in their fertility in their mid to late thirties and so we need to better inform our young women about their potential fertility and enable them to both establish their career and have a family… We should put the family back into family planning and support young mothers with their careers at the same time.” 



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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June
27
 

IVF woes #1: Australia

As couples enter pristine Australian IVF clinics with their smiling staff and photos of bright-as-a-button babies, they are usually unaware of the harsh reality of IVF success rates. The statistics are worse than most would think.

Writing in The Conversation this week, lawyer and bioethicist Loretta Houlahan criticised the suppression of clinic success rates by the Australia and New Zealand Assisted Reproduction Database (ANZARD). Each year ANZARD, an initiative of the National Perinatal Epidemiology and Statistics Unit and the Fertility Society of Australia (FSA), releases generalised figures of success rates in clinics. But individual clinics are not named, leaving would-be-parents in the dark about standards at an individual clinic. This is problematic, considering that individual clinic success rates vary wildly (from 4.0% to 30.9% according to the 2012 ANZARD report.

The current system perpetuates a lack of accountability, Houlahan remarks:

“Year after year, the poor performance of Australia’s worst IVF clinics fails to be explained. Yet these figures raise serious concerns about the practices of the clinics responsible. The issue is there is no obvious plausible scientific explanation for IVF success rates in the single digits. On their own, without clarification, these sorts of figures are simply outrageous and unacceptable.”

Incidentally, the growth of Virtus Health, Australia’s largest IVF provider, has slowed dramatically. Analysts attribute this to both fierce competition in the Australian IVF market and flat growth in IVF demand. At the start of this month the company dramatically revised it net-profit growth forecasts for 2014-2015. 



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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June
20
 

Only connect: the Pope’s global bioethics

The publication of a document by Pope Francis on the environment on Thursday has created a media storm. Laudato Si’ (Be praised, in Italian) is an encyclical, the most authoritative form of Vatican instruction, and is addressed not just to Catholics but to “every person living on this planet”.

Francis hopes that it will influence a Paris summit on climate change at the end of the year. Given his immense popularity and moral prestige, some pundits believe that his contribution could be a game-changer.

In a sense, Laudato Si’ is also an extended meditation on bioethics. Ever since the birth of the discipline in the 1960s, there has been a tension between freedom bioethics with a focus on autonomy and the limits of human intervention on the body and global bioethics, which integrates human activity into ecology. Francis clearly favours the latter approach. The phrase “Everything is connected” is a constant refrain in the document.

So from his perspective, opposition to embryonic stem cell research and opposition to the destruction of the Amazon rain forest are related; preservation of the natural order is paramount. “The natural environment has been gravely damaged by our irresponsible behaviour,” he writes. “The social environment has also suffered damage. Both are ultimately due to the same evil: the notion that there are no indisputable truths to guide our lives, and hence human freedom is limitless.”

Unsurprisingly, then, he rejects the view that man is defined by dominating and transforming nature. There is a natural order in the environment and in human life which must be respected. Technology, he says, “proves incapable of seeing the mysterious network of relations between things and so sometimes solves one problem only to create others.” “This is a point which he uses to attack abortion:

“Since everything is interrelated, concern for the protection of nature is also incompatible with the justification of abortion. How can we genuinely teach the importance of concern for other vulnerable beings, however troublesome or inconvenient they may be, if we fail to protect a human embryo, even when its presence is uncomfortable and creates difficulties?”

Far from being a Marxist rant, as some US conservatives have alleged, the Pope is deeply theological – as if one would expect anything else. “Here we can add yet another argument for rejecting every tyrannical and irresponsible domination of human beings over other creatures. The ultimate purpose of other creatures is not to be found in us. Rather, all creatures are moving forward with us and through us towards a common point of arrival, which is God.”

Rather than “bioethics”, Francis calls his approach “an ecology of man” which established limits on the exercise of human freedom.  And this is what underlies his hostility towards gender theory: “

The acceptance of our bodies as God’s gift is vital for welcoming and accepting the entire world as a gift from the Father and our common home, whereas thinking that we enjoy absolute power over our own bodies turns, often subtly, into thinking that we enjoy absolute power over creation. Learning to accept our body, to care for it and to respect its fullest meaning, is an essential element of any genuine human ecology. Also, valuing one’s own body in its femininity or masculinity is necessary if I am going to be able to recognize myself in an encounter with someone who is different. In this way we can joyfully accept the specific gifts of another man or woman, the work of God the Creator, and find mutual enrichment. It is not a healthy attitude which would seek “to cancel out sexual difference because it no longer knows how to confront it”

Benedict XVI, despite his reputation as a hard-line conservative, saw that he had much in common with Greens, more perhaps than with many political conservatives. They respected the natural order, even if they did not respect God. Francis seems to be following in B16’s footsteps. 



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June
20
 

What should we do with frozen embryos?

As the number of unused frozen embryos in the US burgeons, policy analysts are questioning how authorities should deal with the hundreds of thousands that have been abandoned or have a disputed legal status.  

Even the New York Times have jumped on the issue, publishing a front-page story on the uncertain fate of frozen embryos in America.   

“…In storage facilities across the nation, hundreds of thousands of frozen embryos — perhaps a million — are preserved in silver tanks of liquid nitrogen. Some are in storage for cancer patients trying to preserve their chance to have a family after chemotherapy destroys their fertility. But most are leftovers from the booming assisted reproduction industry, belonging to couples like the Wattses [a couple that used IVF], who could not conceive naturally…”

The article discusses cases like that of Nick Loeb and his ex-fiance Sofia Vergara, currently in a bitter legal dispute over frozen embryos they created.

“Some cases have landed in court, where there is little guidance or precedent for judges struggling with this new territory, and so far, little consistency in their rulings…”

This appears to be one of the predominating concerns about IVF in the US – a lack of regulation in legal jurisdictions across the country.

In a blog post on the Times lead article, author KJ Dell’Antonia cautioned against a tendency to ‘ignore’ embryos that haven’t been needed by parents.

“When it comes to unused embryos, loving and supporting those who become children is the easy part, and the happy personal stories almost a distraction from the harder questions about the embryos that are not donated, are abandoned or become the subject of litigation, as well as decisions about how embryos can be created or change hands. Even the language surrounding those questions is difficult, and the choice of noun or pronoun in describing an embryo speaks volumes.”


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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June
20
 

Sperm from ovaries

This one’s a little technical, but may very well have significant implications for scientist’s ability to influence sex determination in mammals.

Japanese researchers have discovered a way to influence the sexual fate of germ cells in medaka (rice fish).

The Scientist reports:

“Somatic cells in the gonads of a developing vertebrate provide germ cells with cues, such as hormones, to develop into sperm or eggs. Studying the ways these cues affect a germ cell’s commitment to become sperm or eggs, Toshiya Nishimura from the laboratory of Minoru Tanaka at the National Institute for Basic Biology in Okazaki, Japan, and colleagues uncovered a single gene that, when missing from female embryos of the Japanese rice fish, or medaka (Oryzias latipes), leads the fish to produce functional sperm soon after hatching.”

According to the researchers, the gene foxl3, is the sole determinant in the sexual fate of the rice fish. Foxl3 appears to allow female germ cells to react to environmental signals while the mutant is shielded from these gonadal somatic cell cues. 

Researchers disrupted the foxl3 gene in some of the female specimens, and in these fish sperm began to generate in the ovaries. 

It’s unclear whether the results in medaka will have any impact on the study of sex determination in mammals, said Allan Spradling, a developmental biologist at the Carnegie Institution for Science in Baltimore, Maryland.



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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June
20
 

Peter Singer ‘disinvited’ from German philosophy festival

Peter Singer is in hot water in Germany again over his controversial views.

The Australian utilitarian philosopher began his royal progress through Europe well. In late May he added another two honorary doctorates -- from the Universities of Athens and of Bucharest -- to his extensive collection of awards and distinctions. From there he went to Berlin to receive the inaugural “Peter Singer Prize for Strategies to Reduce the Suffering of Animals”. He was introduced in glowing terms by Maneka Gandhi, Indian Minister of Women and Child Development, who is president of People for Animals in her own country. A German politician explained why he was so popular: “Peter Singer's ideas are logical, free from religion and easy to understand”.

However, these encomiums were lost on a gathering outside where about 250 people had assembled to protest the invitation. Their message was that Singer believes in killing babies.

The protest may have unnerved the organisers of an eight-day (only in Germany!) philosophy festival in Cologne called phil.Cologne. Singer’s invitation to speak on May 31 was cancelled -- a bit odd, considering that he had been described in the conference programme as “one of the world’s most influential philosophers”. "How can you call yourself a philosophy festival, if you are too afraid to discuss issues that bother some people?" an exasperated Singer told the Kölner Stadt-Anzeiger afterwards. "Hasn’t that always been the role of philosophers since the days of Socrates?"

What happened?

While the organisers were aware of Singer’s stark views on infanticide and euthanasia, they must have hoped that the public would focus on his role as the foremost theorist of animal liberation. The title of his session was to have been “Will vegans save the world?”

Unfortunately, on May 26 a Swiss newspaper published an interview with Singer in which, under aggressive questioning, he expressed his views with characteristic frankness. Whatever else may be said about Peter Singer, he is no equivocating trimmer. Here are some selections. (Thanks to a reader of the Leiter Reports blog for the translation.)

Neue Zuricher Zeitung: You do not consider an infant to be more worthy of protection than an embryo. On the other hand, you do not necessarily ascribe a higher status to humans than to animals.

Peter Singer: Belonging to the human species is not what makes it morally wrong to kill a living being. Why should all members of the species homo sapiens have a right to life, whereas other species do not? This idea is merely a remnant of our religious legacy. For centuries, we have been told that man was created in the image of God, that God granted us dominion over the animals and that we have an immortal soul.

NZZ: If you were standing in front of a burning house with 200 pigs and one child inside, and you could choose to save either the animals or the child, what would you do?

PS: At a certain point, the animals' suffering becomes so great that one should choose to save the animals over the child. Whether this point occurs at 200 or two million animals, I don't know. But one cannot let an infinite number of animals burn to save the life of one child…

NZZ: How about yourself: are you useful enough?

PS: Considering the influence I've had, my choice of profession is justified. I have motivated people to think about reducing animal suffering and helping people who live in extreme poverty…

NZZ: Would you go as far as to torture a baby if this were to bring about permanent happiness for the whole of mankind?

PS: This question is from Dostoevsky's "The brothers Karamazov"; Ivan poses it to his brother Alyosha. I may not be capable of doing it, as it is in my evolutionarily developed nature to protect children from harm. But it would be the right thing to do. Because if I didn't, thousands of children would be tortured in the future.

This is not the first time that Singer has been “disinvited” in Germany. Back in 1989, 1990 and 1991 engagements in Germany, Switzerland and Austria were cancelled after vehement protests from disability groups. 



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June
20
 

Nepalese surrogacy unearthed

The devastating earthquake in Nepal last April unearthed many harsh realities of life in the poverty stricken country – including the alleged exploitation of young Indian migrants by surrogacy agents in Kathmandu.

After the 2013 Indian government ban on the use of local surrogates by non-married, gay or single parents, surrogacy agents have turned to Nepal where the procedure is less regulated.

While Nepalese locals tend not to act as surrogates, there is no official government ban and scores of migrant women rent their wombs in cities like Kathmandu.

Surrogacy agencies in Nepal lure clients on the Internet with rates that are about a fourth of the prices in the United States. The packages cost between $35,000 and $65,000. The mothers earn between $5,000 and $6,000 of that, the price of a house in that part of Asia. The rest goes into the pockets of doctors and agencies.
SE Asia surrogacy activist group Surrogacy Laws India has expressed concern about the treatment of the women, who are effectively detained in local hotels for the duration of their pregnancy. Surrogacy agents want to avoid criticism from the socially conservative Nepalese community, who are largely ignorant of the science behind IVF and see pregnancy out of wedlock as taboo.

Despite the questionable treatment of surrogates, Nepalese businessmen are excited about the growing surrogacy trade.

"Surrogate mothers can help develop our medical tourism," said Roop Jyoti, the owner of a new surrogacy clinic at Kathmandu’s Grande hospital. "It's good for our economy and our health care system. Agencies have brought us a know-how that it would have taken us years to acquire. Now it's up to the government to decide whether they want surrogate motherhood to develop."



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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June
20
 

The Rachel Dolezal controversy

In the past two weeks the US media has been in a frenzy over allegations that civil rights activist Rachel Dolezal is really ‘white’. Dolezal has gone on the defensive, claiming that she identifies as ‘black’ – but these claims have in turn been met with criticism from all quarters of American society.

So what does this debate really hinge on? In an Op-Ed in the Washington Post,  Pulitzer-prize winning report Amy Ellis Nutt claims that cultural identity has a strong biological substrate in different areas of the brain. This somehow should inform the way we view the Dolezal controversy.

“Individuals contain different selves, often contradictory selves, according to neuroscientists. There is no clump of grey matter or nexus of electrical activity in the brain that we can point to and say, “this is me, this is where my self is located.” Instead, we are spread out over our brain, with different areas of cortex controlling different aspects of who we are, from what we see and hear to how we think and feel.”

Ellis Nutt quotes Carolyn Yoon, a cognitive psychologist at the University of Michigan’s Institute for Social Research. Yoon says she doesn’t “see what the big controversy is” regarding Dolezal’s claim to identify as a black person.

“Identity is highly malleable and is a function of what she comes in contact with, what she spends her time doing, is interested in and motivated by. Over time that will change your brain.”

Another Washington Post journalist, Jonathan Capehart, had no time for Dolezal’s antics:

“A white person identifying strongly with African Americans and African American culture is not a problem at all. The more the merrier in understanding who we are and our place in this nation’s history. A white person running a chapter of the NAACP is not a problem, either. That’s someone so down with the cause that they are putting their time, energy and clout into public activism on behalf of fellow Americans. But a white person pretending to be black and running a chapter of the NAACP is a big problem…

Blackface remains highly racist, no matter how down with the cause a white person is…”



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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June
20
 

Where is Belgian euthanasia headed, asks The New Yorker

The long-drawn-out case of a woman who asked for euthanasia in 2012 may eventually reach a criminal court in Belgium. The European Court of Human Rights wants a Belgian court to hear allegations that there were serious irregularities in the euthanasis of Godelieva De Troyer by  Dr Wim Distelmans.

Ms De Troyer’s son, Tom Mortier, a university lecturer, claims that her own doctor denied his mother’s request for euthanasia because she was depressed. However, Dr Distelmans, who had no psychiatric expertise, readily agreed. Ms De Troyer made a 2,500 Euro donation to Dr Distelman’s Life End Information Forum, which suggests that there may have been a conflict of interest.

Ms De Troyer’s death was just one of 1,432 registered euthanasia deaths in Belgium in 2012. But a careful examination of the details of the case in America's foremost literary magazine, The New Yorker, this week raises serious doubts about the wisdom of legalising assisted suicide and euthanasia in the United States and elsewhere. It is essential reading for anyone interested in end-of-life issues.

“In the past five years, the number of euthanasia and assisted-suicide deaths in the Netherlands has doubled, and in Belgium it has increased by more than a hundred and fifty per cent. Although most of the Belgian patients had cancer, people have also been euthanized because they had autism, anorexia, borderline personality disorder, chronic-fatigue syndrome, partial paralysis, blindness coupled with deafness, and manic depression.”

Astonishingly, at least to people in an Anglophone tradition, Dr Distelmans is both Belgium’s leading practitioner  of euthanasia and the chairman of the board which regulates it and oversees its ever-expanding boundaries. Patients can request euthanasia simply because they are tired of living. Dr Distelmans told The New Yorker.

 “We at the commission are confronted more and more with patients who are tired of dealing with a sum of small ailments—they are what we call ‘tired of life.’ ” Although their suffering derives from social concerns as well as from medical ones, Distelmans said that he still considers their pain to be incurable. “If you ask for euthanasia because you are alone, and you are alone because you don’t have family to take care of you, we cannot create family,” he said.

Although most coverage of Belgium’s euthanasia culture in the media has focused on bizarre incidents like euthanasia for person who was unhappy with a sex-change operation, The New Yorker investigates its spiritual and philosophical roots. One psychiatrist attributes it to a kind of nihilism:

[Dirk De Wachter, a professor of psychiatry at the University of Leuven] believes that the country’s approach to suicide reflects a crisis of nihilism created by the rapid secularization of Flemish culture in the past thirty years. Euthanasia became a humanist solution to a humanist dilemma. “What is life worth when there is no God?” he said. “What is life worth when I am not successful?” He said that he has repeatedly been confronted by patients who tell him, “I am an autonomous decision-maker. I can decide how long I live. When I think my life is not worth living anymore, I must decide.” He recently approved the euthanasia of a twenty-five-year-old woman with borderline personality disorder who did not “suffer from depression in the psychiatric sense of the word,” he said. “It was more existential; it was impossible for her to have a goal in this life.” He said that her parents “came to my office, got on their knees, and begged me, ‘Please, help our daughter to die.’ ”

Inside the euthanasia culture, The New Yorker suggests, most Belgians are puzzled by complaints and criticism. The system is functioning well and has public support. What’s the big deal? But to an outsider, the country where people desperately want to die seems weirder by the day. 



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June
20
 

Repeat clients prefer same sperm donors

Despite a prevalence of anonymous sperm donation in European countries, the use of the same sperm donor for subsequent conceptions is of paramount importance to those couples needing sperm donation to have children.

According to research presented at the annual meeting of the European Society of Human Reproduction and Embryology in Lisbon this month, couples are far from indifferent about genetic links. They  felt that the genetic link between children encouraged better sibling relations, and that visible and other resemblances between the children would reinforce family ties.

The investigators acknowledged the paradox of their findings - that, while sperm (and egg) donation necessarily imply the genetic detachment of the child from one of its parents, couples themselves seem determined to do as much as possible to ensure genetic bonds between their children.

"Donor offspring are increasingly seeking their genetic half siblings through online registries," said Ms Somers. "It's relatively uncharted territory, but it's clear that a genetic link among donor-conceived children is important for aspiring parents." According to findings from this study, full siblings were described by the parents as having "real" and "unambiguous" kin connections.

Some couples talked about their need to use a new sperm donor if the one they had used for their first child was no longer available. This was described for instance as "a problem". When this situation became reality for one couple, they were really "disappointed" and blamed the hospital for "making the mistake of not informing them about the limited 'stock' of sperm".



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June
13
 

Dutch man cleared after helping mother commit suicide

The Arnhem Court of Appeal has cleared a 74-year-old Dutch man who helped his mother commit suicide, despite strict prohibitions on assisted suicide in federal leglislation. The man, Albert Heringa, admitted in 2010 documentary that he had helped his 99-year-old ailing mother Moek to overdose on medication. Dutch law allows euthanasia if carried out in strict conditions by a physician, but assisted suicide by a friend or relative of the person who wants to die remains illegal.

Heringa was brought before a court in 2013 and found guilty of assisting in his mother’s death; the court of appeal rejected this decision.

In a written verdict, the appeals court said Heringa had to decide between obeying the law against assisting suicide and his “unwritten moral duty” to help his mother achieve her wish for “a painless, peaceful and dignified death.”

Heringa "could not lean back and do nothing, while watching her suffer," the verdict said. "This would have caused him life-long feelings of guilt."

Heringa’s mother was suffering from a variety of physical and psychological ailments. The prosecution did not try to question Heringa’s motives, but was simply calling on the court to uphold the legal prohibition on assisted suicide in the country.

Assisted dying advocates see the ruling as very promising. "This is a step in the direction we want to go," said Fiona Zonneveld of the Dutch Association for Voluntary Euthanasia. "Many people who consider their lives completed want to be helped by their loved ones. We think that should be allowed."

 



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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June
13
 

Baby born from ovary frozen in mother’s childhood

A Belgian woman has given birth using transplanted ovarian tissue that she had removed when she was a child.

The 29-year-old woman, who wishes to remain anonymous, suffered from severe sickle cell aenemia since a young age, and had to undergo strong chemotherapy. Doctors chose to remove her right ovary and surrounding ovary tissue before it was damaged by the chemotherapy; her remaining ovary failed following the treatment, meaning that she was extremely unlikely to conceive without a transplant.

As an adult, the woman asked doctors to restore the frozen ovary. The patient started menstruating spontaneously five months later, and became pregnant naturally at the age of 27. She gave birth to a healthy baby boy in November last year.

The gynaecologist who led the treatment to restore the patient's fertility, Dr Isabelle Demeestere, told the BBC the patient was very stressed during the procedure because it was her only option to have a child, but that now she "is of course very happy and is enjoying her new life".

The treatment could potentially allow many other young women with similar ovarian damage to conceive. Doctors did however note that the procedure itself carries risks such as damaging the removed healthy ovary or reintroducing malignant cells at the time of transplant.

About 40 babies have already been born across the world using frozen ovarian tissue taken from older women.

There are, however, many ethicists who have offered a note of caution about the enthusiasm surrounding ovarian tissue transplantation. In a recent article in The Journal of Reproductive Biomedicine Online, Art L. Caplan and Pasquale Patrizio cautioned about the use of ovarian transplants as a treatment for menopause. In another article discussing the ethics of ovarian transplants, Catholic bioethicist Reneé Mirkes argues that it is difficult to justify the procedure using a personalist and teleological ethical paradigm. 



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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June
13
 

New Down syndrome test could be more “efficient”

UK researchers are hailing the development of a "safer" and more "cost-effective" test for Down syndrome. The newly developed procedure, which involves screening the blood of a mother for foetal DNA, is a far less invasive alternative to the current procedure (amniocentesis) used to detect Down’s syndrome.

The new method was recently trialled on 2500 expectant mothers at Grand Ormond Street Hospital in London, and researchers say it is both less risky and cheaper.  

The current method, amniocentesis, involves the sampling of amniotic fluid obtained through the insertion of a hollow needle into a mother’s uterus. This procedure significantly increases the chance of a miscarriage, aside from being quite frightening and often painful for pregnant women.

The new procedure involves one simple blood test. "Instead of taking an invasive sample, we can take a sample of the mother's blood, and we can look at the levels of DNA in mum's blood and, if there's a little bit more chromosome 21 than we expect, that will be an indication that he baby has Down's syndrome”, explained Lucy Jenkins, director of Genetics at Great Ormand Street Hospital.

The test does not, however, totally eliminate the need for amniocentesis. Mothers who ‘test positive’ on the blood test still need to undergo amniocentesis for confirmation.

"We have approached women to be involved in this study who maybe have a more moderate risk associated with Down's syndrome, so there are women having access to the test who wouldn't previously have had," Dr. Jenkins said.

"Also, women who would never consider having an invasive test, maybe would access this test because it's less invasive."

Disability rights groups are concerned that the new test will increase the number of disabled children being aborted.

But experts claim this will not necessarily happen. “It may offer parents more choices, but I don't think all of those parents are necessarily going to choose to terminate the pregnancy”, said UCL Professor and trial co-ordinator Lyn Chitty. 



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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June
13
 

Planning for a world with LGBT bioethics

With same-sex marriage and the transformation of Bruce Jenner into Caitlyn Jenner in the world headlines, it’s time to ask what LGBT bioethics would look like. Timothy Murphy, of the University of Illinois College of Medicine,  foreshadows some of the major themes in the journal Bioethics.

Bioethics benefits. “Bioethics is better than it would otherwise have been, because people queer in their sexual interests and identities have challenged misconceived concepts of health and disease, challenged obstacles to access and equity in healthcare, and forced attention to professional standards in clinical care, among other things.”

Defending LGBT parenting. To show that the battle is not completely over, Murphy cites Oxford philosopher John Finnis’s implacable opposition to adoption by male and female homosexuals as “intrinsically evil”. Putting “skepticism about LGBT people as fit parents fully behind it” will be one of the first tasks of fully developed LGBT bioethics.

Promoting new reproductive technologies. In the not-too-distant future it may be possible to use stem cell technology to create synthetic gametes for gay and lesbian couples. This will allow them to raise their own genetic children. “This option would go a long way in helping transgender people express and consolidate their gender identity,” writes Murphy. Another development could be “male pregnancies”. Now that it is possible to transplant a uterus, why couldn’t males bear children?

Paying for them. Shouldn’t insurers and the government pay for these very expensive technologies, if they already cover costs for heterosexual couples? “We need to begin asking these LGBT-centric questions.”

Clarifying the scope of conscience exemptions. Denying legitimate medical services to LGBT patients should not be protected by the law. “If clinicians may turn patients away because of their perceived sinfulness or immorality, it would be difficult to set any limit on the exercise of that right … If we go that way, healthcare would be a moral bazaar, undercutting its overall value by reducing its efficiency.”

Achieving status equality. “A strong presumption in theory that LGBT people are the equals of everyone else is one very good starting point for working toward the achievement of that exactly that equality in practice.”

This particular article only hints at the panorama of changes and challenges for LGBT bioethics. But there could be many others, some quite unexpected. For instance, in a previous article in Bioethics, Murphy argues in favour of sex selection of infants. While one objection to this is the possible distortion of the sex ratio, Murphy points out that from an LGBT perspective “Complications about who qualifies as ‘male’ and ‘female’ complicate judgments about the ratio”. He concludes that “The natural sex ratio cannot be a sound moral basis for prohibiting parents from selecting the sex of their children.”



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June
13
 

European court allows “vegetative” patient to be starved to death

Doctors have been given permission to remove food and water from Vincent Lambert, a severely brain-damaged, 38-year-old Frenchman. After a long legal battle, the European Court of Human Rights ruled last week that  ending artificial nutrition and hydration did not violate Article 2 of the European Convention on Human Rights, which guarantees the right to life.

Like the Terri Schiavo case, the fate of Mr Lambert, who was injured in a car accident seven years ago, has pitted his parents against his wife. In this case, his wife Rachel says that he would not want to be kept alive in a vegetative state. She is supported by six of his siblings. His parents, however, deny that he is in a vegetative state and are supported by two of Lambert’s sisters and a half-brother, have vowed to fight on to keep him alive. They claim that he is responsive.

This week the controversy erupted again when a supporter of the parents released a video which purported to show Vincent responding to his mother’s voice. Doctors were outraged. His former doctor said that this proved nothing. "These patients in a vegetative state react to their environments but it is a vegetative response," he said. "This video is an attack on his dignity and his right to privacy - it's manipulative and plays on people's emotions."

In 2013 a lower court allowed doctors to discontinue treatment. Lambert lasted 31 days without food and very little water before a judge ruled that this breached his right to life. The present judgement overturns this ruling. Euthanasia is currently illegal in France, but the court reasoned that withdrawing “life-sustaining treatment” was not directly causing his death and that therefore this could not be regarded as euthanasia.

Twelve of the judges in the ECHR voted to allow Lambert to be starved to death. However, there were five who strongly dissented. They pointed out that he is not brain-dead, can breath on his own without a life-support machine, can digest food, is not in pain and is not in a terminal situation. “What is the overriding reason, in the circumstances of the present case, justifying the State in not intervening to protect life?... Is it because the person is of no further use or importance to society, indeed is no longer a person and has only ‘biological life’?” They concluded:

“In 2010, to mark its 50th anniversary, the Court accepted the title of The Conscience of Europe when publishing a book with that very title … We regret that the Court has, with this judgment, forfeited the above-mentioned title.”

According to the European Centre for Law and Justice, tens of thousands of other patients in Europe are in the same situation as Mr Lambert. It says that this decision puts their lives at risk. 



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June
13
 

Germanwings pilot had seen 41 doctors in 5 years

Further revelations about the co-pilot of the Germanwings crash in which 150 people died have raised questions about medical confidentiality. A prosecutor in Paris said this week that Andreas Lubitz had seen 41 doctors in five years. Further investigations have uncovered the fact that he suffered from psychosis and was terrified of losing his sight.

In a letter to a doctor written on March 10, for instance, Lubitz said he was sleeping only two hours a night even though he was taking a double dose of antidepressants. “He consulted private doctors and these doctors were clearly aware of his health problems, which were both psychological and psychiatric,” said the French official. However, due to strict medical privacy rules, the doctors could not pass this information to the pilot’s employers. The Wall Street Journal says:

“The French probe goes to the heart of a broader discussion over whether stringent privacy laws in Germany and other parts of Europe should be relaxed when it comes to aviation safety. Laws aimed at protecting privacy and doctor-patient privilege allowed Mr Lubitz to conceal his condition from Germanwings, the budget airline of Deutsche Lufthansa , and ignore at least one doctor’s opinion that he shouldn’t have flown the day of the crash.”



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June
13
 

Looking back: Daniel Callahan

The dominant view of bioethics frames issues in terms of autonomy and individual rights. A retrospective in the Cambridge Quarterly of Heathcare Ethics, by Daniel Callahan, one of the grand old men of American bioethics, is a reminder of a broader and more communitarian view of the discipline.

Callahan is a restless thinker who did his undergraduate study at Yale and his PhD at Harvard. But the academic life did not suit him and he turned to journalism and for several years edited Commonweal, an influential Catholic journal. After splitting with the Church over abortion, in 1969 he co-founded The Hastings Center, a leading bioethics think tank.

Here are a few paragraphs:

I became known as an autonomy-basher, not because I objected to autonomy as an important human value but because I objected to an undercurrent trend that seemed to reduce ethics itself to nothing but individual free choice disconnected from an even more important question: what counts as a good or bad choice, a good or bad person, or a good or bad society? Those questions seem to make Tea Party–like autonomy zealots acutely uncomfortable …

I wanted to directly challenge what I take to be the present “reigning goals” of medicine, its de facto working agenda: (1) that death is an inherent evil to be pursued relentlessly and without limits—and by this I mean the search for cures for lethal disease, not end-of-life care when a cure is no longer possible (an important distinction); (2) that the royal road to curing disease is medical research and technological innovation; (3) that meeting healthcare needs trumps other societal needs when they clash; (4) that the notion of limits to progress and innovations is heretical, a threat to all the values bequeathed to us by the Enlightenment; (5) that nature is to be dominated and manipulated to human ends; and (6) that it is individual good and autonomy that takes priority over the common good …

My latest book project, and probably my last ambitious one, is a comparative study of five global crises (so labeled by the World Health Organization): global warming, food shortages, water quality and shortages, obesity, and chronic illness. I call them the five horsemen, and I chose them for their unique common feature: after some 30–40 years of international government and private efforts and research, and after the spending of billions of dollars, they are all getting steadily worse, with little progress of any serious kind being made. Perhaps there is a certain masochism (or maybe hubris) in going after such a difficult and often depressing topic, but there was another reason for my choice as well: in every case there is agreement that dealing with the problem requires massive changes in deeply embedded cultures, behavior, and ways of life. It is our industrial societies that have given us prosperity but also global warming, our extended life spans that have brought with them huge increases in chronic illness, and the improvements in our diets that, ironically, have brought about the cheaper food that also gives us obesity, which is on the rise in poor countries (where citizens can now afford meat). How do we change the ways of life that turn the initially good into the bad?

Is that a bioethics problem? Not quite, by the usual notions of what bioethics is all about. But if bioethics is what people in bioethics do, and I am in bioethics, then why not? Some of us who started the field can perhaps introduce some new possible directions. The fact that I am utterly over my head, with no background at all in the case of three of my five horsemen, is part of the charm for those of us who seek variety and adventure.



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June
13
 

A “mercy killing” outside the law

One issue that seldom surfaces in discussions about the legalization of assisted suicide and euthanasia is the message it may send to unbalanced people. A snapshot of what could happen is the death in February of 81-year-old David Paterson, who was dying of cancer in a nursing home in Yorkshire, in the UK. Mr Paterson was a regular church-goer and a firm opponent of euthanasia. However, in his last days, he became emaciated and weak, although his pain was controlled with morphine.

A fellow parishioner with alcohol problems, 54-year-old Heather Davidson, befriended the widower and became very concerned about his health. One day she rang a cancer support organisation to ask whether smothering her new friend would make her a murderer. “If he was a dog he would have been put down months ago,” she said. Although she was clearly told that it would be murder, Ms Davidson took matters into her own hands and smothered Mr Paterson. She regarded this as a “mercy killing”.

Ms Davidson, it turns out, knew a thing or two about dogs, as she had a previous conviction for attempting to smother her neighbour’s pet. She was sentenced to life imprisonment after pleading guilty to Mr Paterson’s murder. “You were only were saving him a few hours of suffering. In so doing you deprived him of what he wanted most, a natural death. This private man did not in death have a private ending,” the judge said. 



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June
13
 

German parliament to debate assisted suicide

Two bills authorising assisted suicide have been presented to the German Parliament ahead of a debate in July. One of them bans assistance for a fee, which is legal in Switzerland, Belgium and the Netherlands; the other would grant the right to die to any competent adult who has been counselled by a doctor. In Germany it is currently illegal for a doctor to prescribe and administer a lethal medication. According to Deutsche Welle, the Bundestag hopes to pass new legislation on assisted suicide by November this year. 



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June
06
 

Surrogacy law a child of our times

A British lawyer has slammed Britain’s “inhumane surrogacy laws”, following a decision in the High Court to take a one-year-old girl from her surrogate mother and give her to her gay parents.

The case in question involved a 43-year-old Romanian woman who two years ago struck a deal with a male gay couple. The woman conceived via IVF using sperm from one of the men, only to decide during the pregnancy that she wanted to keep the child. Following the birth the case escalated to the courts, and ended just last month with a judge of the high court ordering the woman to hand over the child to the gay father.

Well-known British solicitor and legal analyst Jon Holbrook says that “something is seriously wrong with the moral compass of our policymakers.”

Holbrook argues that bearing a baby in utero is a morally significant fact that courts should take into account. It is a gross injustice, he argues, to ignore the intense psychological and emotional bond that arises from childbearing:

“The fact that the mother has carried the baby for nine months and given birth to it gives her no right to resist a residence application from the commissioning father … The law on surrogacy now treats the birth mother as little more than a vessel – and that is inhumane…”

Holbrook sees the current state of the law as “the product of a discourse of misplaced equality and contractual rights that flattens the moral landscape”:

“The notion that a mother can have rights is anathema to today’s policymakers, who have been schooled in the discourse of equality, as now ratified in the Equality Act, to reject instinctively any form of differential treatment on the grounds of sex.”

He argues that we need to rethink the contractualism of surrogacy laws like those in Britain to take into account the emotional complexities of surrogacy. 

“Given that the mother had not caused her child any serious harm, shouldn’t the law have accepted the mother’s right to raise her child? Is it now the case that a surrogate mother faces the possibility of enduring emotional anguish unless she is wealthier, more articulate, more composed, more politically correct and more in touch with the latest views on parenting than the commissioning parents?”

Holbrook closes by arguing for a return to moral and philosophical approach to surrogacy, rather than a clinical and contractual legal approach. 



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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June
06
 

The bioethics of genetic diversity

The latest issue of the American Journal of Bioethics examines the topic of new reproductive technologies and genetic diversity. A series of articles discuss the ethical issues surrounding the protection of genetic variation in a population.

Monash bioethicist Robert Sparrow’s ‘Imposing Genetic Diversity’ – the target article for the discussion – considers the radical implications of arguments against the new eugenics that focus on the importance of diversity. 

Sparrow, though himself no friend of eugenic logic, questions whether arguments about the value of diversity could potentially have authoritarian implications. If we desire to conserve genetic variation and naturally occurring instances of disability in our world, then why shouldn’t we protect disability and – in extreme cases where disability begins to disappear – impose disability on populations.  

“Diversity clearly makes the world a more interesting place and the idea that we should conserve genetic diversity is therefore tempting. Yet when we imagine imposing genetic diversity to secure this same good, its value is revealed as elusive, especially if we concede that it must be achieved at the cost of the well-being of some individuals whose existence has been used to produce a benefit enjoyed mainly by others.”

In a response to Sparrow’s article, bioethicist and disabilities advocate Rosemarie Garland-Thompson argues that the very project of trying to design “the future people we want” (viz. the use of reproductive technologies to produce the best possible babies) is inherently problematic, as we do not have the power to predict all the contingencies of the future world. Hence we should neither impose disability nor attempt to eradicate it:

“All present actions shape the future, but we cannot predict or control all of the outcomes. History confirms the liabilities of this Promethean enterprise…Our shared present is filled with the unintended consequences of our predecessors’ design limitations. Our presents of nuclear disaster, global warming, endangered and invasive species, environmental degradation, toxic waste, ethnic cleansing, and “perfect” Aryans are the unanticipated consequences of past designs intended to make a better future”.

The journal issue also features a response from Oxford bioethicist Julian Savulescu, who defends his theory of procreative beneficence – viz. the supposed moral obligation of parents to have the healthiest children through all natural and artificial means available. Savulescu introduces a nuance into his theory, saying that it is not necessarily health that matters, but rather the prospective quality of life of a child (which involves not just health but also socio-cultural factors):

“When one makes procreative choices, one must predict not only the natural but also the social environment. Our nature as social animals ensures diversity in value of life. Whether this means that lives with deafness, blindness, or intellectual disability are likely to be among the best lives is a question I cannot address in this short commentary.” 


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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June
06
 

How can we combat science fraud?

A recent editorial in the New York Times raised the question of cheating in academia. This year alone there have been at least three major cases of academic fraud:

“the journal Environmental Science & Technology corrected a March paper on fracking because the lead scientist failed to disclose funding from an energy company. In May, The Journal of Clinical Investigation retracted a paper on cancer genetics from a young researcher at the National Cancer Institute because the data was fabricated.”

And a study in Science on attitudinal change and same-sex marriage was retracted last week due to serious problems with reproducibility.

The Times suggests that there is a need for greater scrutiny of papers being submitted to publications, particularly those submitted by young researchers:

“The scientific community clearly needs to build a better safety net… It can start by ensuring that scientists, especially peer reviewers, are allowed to see the underlying data of a paper, which researchers are typically reluctant to share.”

The editors also called for increased funding for independent regulatory bodies:

“The federal Office of Research Integrity should be given ample funds and sufficient independence to investigate all major cases that come to its attention. Another answer to the problem of fraudulent research, though, might be more research. The federal government could sponsor studies to determine how much cheating goes on, how much harm it causes and how best to combat it.”

The Times editorial quickly drew media attention. The conservative Power Line blog mocked it for oversimplification and for recommending “more money and more power for the federal government.” A Vox.com posting declared that “focusing solely on scientists’ cheating ways misses a bigger issue here. It’s not just bad apples themselves who are to blame. The scientific process itself has serious structural flaws.”



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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June
05
 

California moves closer to passing assisted suicide bill

California Senate   

California is now one step closer to legalising assisted suicide after a bill passed in the State Senate by a vote of 23 to 14 on Thursday evening. SB-128 now moves to the State Assembly (the lower house). Governor Jerry Brown, who once trained as a Jesuit priest, has given no indication of how he will vote.

It is hard to tell what the outcome will be. Similar measures failed in 2005 and 2007. Opponents of the bill are determined to lobby hard against it. “This bill ... tells people with disabilities who face a terminal diagnosis, that may well prove inaccurate, that there is no dignity in our lives,” said Marilyn Golden of the Disability Rights Education & Defense Fund. “Assisted suicide is dangerous, and we are going to bring that message loud and clear to every member of the state Assembly and the governor.”

The 90-minute debate before the vote was deeply emotional. The author of the bill, Senator Lois Wolk told the Senate:  “I was 17 when my vibrant young mother ended a three-year struggle with metastatic cancer, and it was frankly brutal. “Her suffering was prolonged and unbearable – for her, certainly, and also for her family,” she said. “It does not have to be this way.” Senator Ted Gaines, on the other hand, argued that “Doctors should kill disease. They should kill pain. They should not kill their patients.”

The California bill is modelled on Oregon’s statute.  Two doctors must confirm that a patient has six months or less to live and his mental competence. He must make two verbal requests to a doctor for help in dying in the presence of witnesses, at least 15 days apart. The medication must be self-administered. There will be penalties for pressuring a patient to make a request or for forging a request.

Two factors almost certainly influenced the vote. California resident Brittany Maynard moved to Oregon last year in order to take her life legally. Videos of the 29-year-old’s plea for a change in the law – financed largely by Compassion & Choices, America’s leading assisted suicide lobby group – went viral.

And the California Medical Association has dropped its long-standing opposition to assisted suicide. “The decision to participate in the End of Life Option Act is a very personal one between a doctor and their patient, which is why CMA has removed policy that outright objects to physicians aiding terminally ill patients in end of life options,” said the CMA President.

The CMA is the first state medical association in the nation to change its stance on physician aid in dying. (Oregon’s medical association never opposed it.) Since 1987, the CMA opposed any law that would require a physician to aid in the death of a patient. In the 1990s, it also condemned voluntary active euthanasia by physicians and opposed physician-assisted suicide clinics. However, a CMA resolution to remain open to the multiple views and perspectives of various participants was also passed during that time, leaving the door open to the latest decision.



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June
05
 

The other California girl in a video about assisted suicide

Brittany Maynard’s story continues to reverberate in California’s debate about assisted suicide. However, opponents of bill SB-128 also have stories. Stephanie Packer, another California resident, was also 29 when doctors told her that her illness was terminal. They gave her three years, three years ago, so she feels that she is doing well.

Her disease is scleroderma, a hardening of tissue. In her case it has settled in her lungs. According to NPR, “Packer's various maladies have her in constant, sometimes excruciating pain, she says. She also can't digest food properly and feels extremely fatigued almost all the time.” However, she is buoyed up by the love and support of her four rambunctious children and her husband.

"Wanting the pain to stop, wanting the humiliating side effects to go away — that's absolutely natural," Packer says. "I absolutely have been there and I still get there some days. But I don't get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn't have to be."



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June
05
 

Belgian euthanasia under fire again

A leading academic has published a stinging critique of how Belgium administers its euthanasia law. Writing in the Journal of Medical Ethics, Rafael Cohen-Almagor, an Israeli professor of politics at the University of Hull, says that Belgians should be alarmed by the deliberate shortening of lives of some patients without their explicit voluntary request.

Consent is supposed to be a cornerstone of Belgium’s euthanasia act, but Cohen-Almagor, after surveying reports and articles, believes that the number of patients who are killed outside of the law is disturbing. “Ending patients’ lives without request is more common than euthanasia,” he says. He urges the Belgian medical profession to place reform high on their agenda.

Euthanasia has taken root in the culture of Belgium, he observes. Support for euthanasia among doctors is over 90%. “Social and peer pressure makes it difficult for those who oppose euthanasia to uphold their position in the liberal culture that has been developing,” he says. About 90% of the public also support it.

In this atmosphere, consent seems to have become optional for a particularly vulnerable group, “80-year-old patients or older who were mostly in coma or suffered from dementia”. Killing them is clearly against the law, but Belgian physicians are ignoring its letter and observing its spirit – as they interpret it. “Whether deliberately or not, the physicians were disguising the end-of-life decision as a normal medical practice,” he says, citing a 2010 study.

Cohen-Almagor highlights last year’s position paper by the Belgian Society of Intensive Care Medicine Council. This document says that “shortening the dying process with use of medication may sometimes be appropriate, 'even in the absence of discomfort'”. Furthermore, the final decision for terminal treatment lies in the hands of the medical care team, not necessarily the relatives. He criticizes the paternalism of the statement and points out that it fails to mention the word “consent”.

He concludes by asking: “If Belgium has been unable to control abuse—and does not seem to have tried very hard—what reason is there to believe it will be controlled in the future?” 



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June
05
 

Not nature OR nurture but nature AND nurture

One of the enduring questions of biology – whether our health is governed by nature or nurture – has been settled, say researchers from Australia and the Netherlands. University of Queensland researcher Dr Beben Benyamin from the Queensland Brain Institute collaborated with researchers at VU University of Amsterdam to review almost every twin study across the world from the past 50 years, involving more than 14.5 million twin pairs.

The findings, published in Nature Genetics, reveal on average the variation for human traits and diseases is 49 per cent genetic, and 51 per cent due to environmental factors and/or measurement errors.

“There has still been conjecture over how much variation is caused by genetics and how much is caused by environmental factors -- what people call nature versus nurture,” Dr Benyamin said.

“We wanted to resolve that by revisiting almost all the genetic twin studies conducted over the past 50 years, and comparing all of them together,” he said.

Although the contribution of genetic and environmental factors was balanced for most of the traits studied, the research showed there could be significant differences in individual traits.

For example, risk for bipolar disorder was about 70 per cent due to genetics and 30 per cent due to environmental factors.

“When visiting the nature versus nurture debate, there is overwhelming evidence that both genetic and environmental factors can influence traits and diseases,” Dr Benyamin said.

“What is comforting is that, on average, about 50 per cent of individual differences are genetic and 50 per cent are environmental. The findings show that we need to look at ourselves outside of a view of nature versus nurture, and instead look at it as nature and nurture.”



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June
05
 

New Pope. Old song.

The single most influential individual in bioethics, for better or worse, as he has as many fans as detractors, is Pope Francis. The new head of the Catholic Church has a reputation for progressive social views, but there is little sign that he has relaxed Catholic views in his latest speech on bioethics to participants in a meeting of the Science and Life Association. He attacks abortion, praises the mystery of human life, and links the pro-life cause to refugees, workplace safety, terrorism and world hunger.

… The existence of the human person, to which you dedicate your care, is also your constitutive principle, it is life in its unfathomable depth that originates and accompanies the whole scientific path; it is the miracle of life that undermines any form of scientific presumption, restoring primacy to wonder and beauty. … I invite you to highly maintain your gaze on the sacredness of every human person, so that science may truly be at the service of man, and not man at the service of science.

The scientific reflection uses a magnifying glass to stop and analyze certain details. And thanks to these analytical capabilities, we reaffirm that a just society recognizes the right to life from conception to its natural end as primary. But, I would like for us to go beyond, and to think attentively to the time that unites the beginning with the end. Therefore, recognizing the priceless value of human life, we should also reflect on how we use it. Life is above all a gift. But this reality generates hope and a future if it is enlivened by fruitful ties, from family and social relationships that open new perspectives.

The degree of progress of a civilization is measured by its ability to protect life, especially in its most fragile stages, rather than by the spread of technological means. When we speak of man, let us never forget the attacks on the sacredness of human life. The scourge of abortion is an attack on life. Leaving our brothers on the boats in the Sicilian channel is an attack on life. Death in the workplace is an attack on life because the minimal security conditions are not respected. Death by malnutrition is an attack on life. Terrorism, war, violence and also euthanasia are an attack on life. Loving life means always to take care of the other, to wish him well, to cultivate and respect his transcendent dignity.

Dear friends, I encourage you to re-launch a renewed culture of life, that knows how to build networks of trust and reciprocity and knows how to offer horizons of peace, mercy and communion. Do not be afraid to embark on a fruitful dialogue with the whole world of science, even with those who, while not professing themselves as believers, remain open to the mystery of human life.



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June
05
 

What the world needs is young dads

A couple of years ago, PETA, the radical animal welfare organization, developed a marketing campaign around a 96-year-old Indian man named Ramajit Raghav who had just entered the Guinness Book of World Records as the world’s oldest father.

However, an article in the Journal of Medical Ethics questions the ethics of Mr Raghav's paternity. Dr Kevin R Smith, of Aberdeen University, in Scotland, points out that the older the father, the higher the rate of birth defects. With more and more men choosing to marry and have children later in life, additional disabled children could eventually lead to a significant burden on the economy and might even decrease the evolutionary fitness of the human race. This makes the age of paternity a serious ethical problem, he says.

He proposes four solutions:  health education to promote earlier fatherhood, incentives for young sperm donors and state-supported universal sperm banking, and eventually human germline modification (ie, eugenics). Dr Smith favours sperm banking. He envisages a society in which 18-year-olds will be asked to bank their sperm in preparation for future fatherhood via artificial insemination.

 Ideally, therefore, sperm could be taken (on a voluntary basis) from all young men, with AI becoming the norm for procreation. To be successful this would require state-funded infrastructure support, along with educational/publicity approaches to encourage young men to participate. If this form of society-wide sperm banking were to be widely adopted, and repeated throughout successive generations, it would have marked benefits for the human gene pool over the long term. This approach may appear radical or intuitively unwelcome to some, in that it would entail a wholescale move away from natural conception. However, a societal shift of this kind does not seem to be open to serious objection on ethical grounds.

As well, society should curb procreation by men who are over 40. “This approach, if successful, would undoubtedly have benefits in terms of maximising health and reducing mutational burden.” 



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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
 

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.



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
 

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”.



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
 

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.



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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.”



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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."


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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.


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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.”



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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.”



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
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 norma