Monday, July 06, 2015

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The Supreme Court has handed down a landmark ruling on same-sex marriage which effectively legalises it throughout the United States. President Obama welcomed the decision. “Today,” he declared, “we can say, in no uncertain terms, that we have made our union a little more perfect.” A rainbow light show was projected onto the White House as a sign of the Administration’s joy.

Although it’s a bit churlish of me to open the door of the party and let in the cold air, are there any bioethical challenges which follow in the wake of Obergefell v. Hodges? I can think of three.

First, most married couples want children. Where are the children of gay and lesbian couples going to come from? An adult outside of the relationship has to supply gametes to create the child. This has already led to a tangled web of relationships with multiple parents for a single child. This trend will accelerate. In due course, it may be possible to “manufacture” sperm and eggs from stem cells. This could provoke another stem cell debate.

Second, many gay couples will need surrogate mothers. Much of the demand for surrogate mothers in developing countries is generated by this consumer group. A couple of years ago BioEdge surveyed Indian IVF clinics. Most of them were expected a surge in demand if same-sex marriage was legalised. Surrogacy is dangerous work and only poor and desperate women take it on – which is why so few surrogate mothers live in New York’s Park Avenue. Surrogacy is a kind of exploitation which raises important ethical questions.

Third, conscience rights will be tested. In his dissent Justice Alito said, “the majority attempts, toward the end of its opinion, to reassure those who oppose same-sex marriage that their rights of conscience will be protected … We will soon see whether this proves to be true. I assume that those who cling to old beliefs will be able to whisper their thoughts in the recesses of their homes, but if they repeat those views in public, they will risk being labeled as bigots and treated as such by governments, employers, and schools.” Conscientious objection is already a big topic in bioethics journals. It will grow bigger.

I am sure that there are others. Any ideas? 

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Michael Cook
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This week in BioEdge

2015-06-22 11:22 AM
The Economist to campaign on Belgian model of euthanasia
by | Jun 27, 2015
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tags: Belgium, euthanasia, The Economist


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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Face recognition technology may threaten privacy
by | Jun 28, 2015
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tags: 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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Dutch paediatricians back euthanasia for under-12s
by | Jun 27, 2015
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tags: euthanasia, euthanasia for children, Netherlands

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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‘I can see what you’re saying’
by Xavier Symons | Jun 27, 2015
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tags: brain scans, neuroethics, neuroscience

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”.

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French senators reject ‘deep sleep’ bill
by Xavier Symons | Jun 27, 2015
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tags: France, law, passive euthanasia, professional ethics, terminal sedation

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

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IVF woes #2: older women
by Xavier Symons | Jun 27, 2015
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tags: egg freezing, family, infertility, IVF

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.” 

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IVF woes #1: Australia
by Xavier Symons | Jun 27, 2015
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tags: Australia, conflict of interest, IVF, regulation

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. 

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Michael Cook
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