A long-time member of Philip Nitschke’s Exit International organisation, Dr Goodall was able to find support for his request for assisted suicide overseas. A GoFundMe campaign organised by Dr Nitschke raised enough money to finance a business class flight to Basel. He will die there with the help of Dr Erica Preisig, the  head of lifecircle, a splinter group from the better-known organisation Dignitas.

A successful academic who retired in 1979 from teaching, Dr Goodall edited a 30-volume series of Ecosystems of the World after his retirement. An attempt by Edith Cowan University to take away his office at the age of 102 because he was unfit to be on campus failed after an international uproar.  

“I greatly regret having reached that age,” he said upon reaching his 104th birthday. “I’m not happy. I want to die. It’s not sad particularly. What is sad is if one is prevented. My feeling is that an old person like myself should have full citizenship rights including the right of assisted suicide.”

Although Dr Goodall is healthy enough, considering his age, he did not seem well supported in day-to-day life. Although the extensive media coverage about his decision focused on airport hugs from his grandsons, none of his family accompanied him on his trip to Switzerland. Instead, his travelling companion was the West Australian coordinator of Exit.

The turning point for him seemed to be a fall in his one-bedroom flat. Although he did not break any bones, he was unable to get up from the floor and remained there for two days. 

Baroness Mary Warnock, a distinguished Oxford ethicist, was the chair of the Committee of Inquiry into Human Fertilisation and Embryology of the UK Parliament in 1982-1984 – which produced the Warnock Report. Its recommendations eventually became the Human Fertilisation and Embryology Act 1990, which governs human fertility treatment and experimentation using human embryos in the UK.

At 94, she is still going strong. BioNews, of the Progress Educational Trust in London, interviewed her about the impact of the Warnock Report. Here are a few brief excerpts:

The selling point of her controversial recommendations:

I think the most important thing really, and the only reason it managed to get through Parliament, was that we had the 14-day cut-off rule. If we hadn't had a definite number of days beyond which it would be a criminal offence to keep an embryo alive in the lab – that was immensely important [in getting through] ...

I'm perfectly sure that if we had tried to describe a stage of development of the embryo which would be the cut-off that would not have worked. Everybody can count up to 14, and everybody can keep a record. It was the simplicity of that rule that made it successful.

The trickiest ethical issue:

It was difficult in the sense that we were dealing with something completely new. There had never been an embryo alive outside the uterus in the lab before. There were absolutely no precedents.

The research had to go on but the process was very precarious at the beginning, finding a way to keep the embryo alive [in the lab]. If an embryo was used to carry out this research it would have been quite immoral to use the embryo to implant in a uterus – you wouldn't know if it had been damaged. This was an ethical issue that divided the committee itself, and the public.

[Then] we were recommending that embryos should be created and deliberately used for research and then destroyed – this is what people described as murder.

Does IVF need to be regulated now that it is so well established?

The first recommendation in our report was to set up the HFEA to inspect and monitor infertility treatment. I believe that is very important because it has more or less ruled out rogue practitioners. People who are infertile and want to start a family are very desperate and therefore very vulnerable. I wouldn't want that [protection] changed for anything. People say it's over-regulated – I think that's a fault on the right side.

On the disability lobby:

The one thing I do deplore is the attitude of what I think of as the disability lobby who think it's wrong to try and eliminate hereditary diseases because it is suggesting that they are unworthy of life. That is an absolutely terrible argument. The disability lobby is very vocal on this subject and it does form a real obstacle on progress.

Britain’s oldest IVF parents have had their child removed by a government agency after they failed to meet minimum care requirements. The unnamed couple, the mother aged 63 and her partner 65, are “devastated”, according to a report in the London daily The Sun.

“Social services have been dealing with them since last year and told them to make improvements in how the child was being looked after,” The Sun was told. “They then decided that the called-for improvements had not happened and took the child into care.”

The couple live in the north of England. Last year they engaged a surrogate mother in her 30s who was impregnated with the male partner’s sperm and a donor egg. The procedure was carried out overseas, as British clinics were reluctant to help a couple at such an advanced age. Legally speaking, the matter was complicated. The surrogate mother and her partner were named on the birth certificate as the parents, but the baby was then adopted by the commissioning couple.

The elderly couple are still fighting to regain custody of the child.

Five years ago, a German couple, Karl and Inge, signed an agreement granting permission to an IVF clinic to create embryos with their frozen sperm and eggs. Then came divorce. Then Inge forged Karl’s signature twice to create embryos which resulted in the birth of a son. Then Karl was billed for child support.

Karl, unwilling to support children he had never consented to create, filed a lawsuit to be released from the obligation. He contended that after the separation he had revoked his permission for creating the embryos and that the clinic should assume financial support for the child. Inge, now 42, has subsequently been convicted of forgery.

But a regional court in Munich has ruled against Karl after finding that he had not been clear enough when he phoned the clinic to revoke his consent for the fertilized eggs to be used. At the time, he was told to discuss the matter with his ex-wife. When the clinic personnel had not heard back from him, they assumed his consent. The clinic, the court added, had no reason to doubt the authenticity of the forged signatures.

Debate over self-driving cars has intensified in the US following the two driverless vehicle fatalities in March. Some commentators argue that all driverless car tests should be halted until safety concerns are addressed.

Yet there is another question that requires urgent consideration, namely, “what kind of ethics should we program into driverless cars?”. Self-driving cars may face decisions involving a choice between which lives to prioritise in the event of an impending crash. And these decisions require ethical answers.

A new paper in the journal Frontiers in Behavioral Neuroscience analyses the views of human beings on how driverless cars should manage these situations. Researchers from Osnabruck University in Germany analysed the responses of 189 participants to a series of difficult ethical scenarios, including a scenario in which participants must choose between careering into a crowd and running over a single pedestrian, and another scenario in which participants must choose between sacrificing their own lives or taking the lives of a group of pedestrians.

The researchers found that respondents overwhelmingly sought to minimise loss of life, and where generally willing to sacrifice their own lives. Respondents also tended to favour younger persons over older persons.

The researchers described the respondent’s intuitions as “utilitarian”, and noted a conflict between this and the egalitarian philosophy underpinning current government regulations on driverless technology.

Throughout the experiment the subjects' decision making is more in line with utilitarianism, i.e., utilitarianism is more sensitive to the factors which subjects seem to recognize as morally relevant...The factors identified here, however, clash not only with moral theories, but also with political norms as laid out by the German ethics commission for autonomous driving.

The authors recommend that policy makers establish an open dialogue with broader society about the moral norms for self-driving cars. Policy makers should attempt to explain their egalitarian policies, cognisant that if the public rejects them they may need to be revised.

What does it mean for a human being to “die”? This question is more complex than one might think. In the domain of vital organ procurement, there is significant disagreement about the criteria that we should employ to assess when someone has died.

The standard criterion for several decades has been the “brain death” criterion, according to which a patient can be pronounced dead once “whole brain death” has occurred. Whole brain death refers to the comprehensive and irreversible cessation of brain function, typically caused by trauma, anoxia or tumor.

Yet transplant surgeons have in recent years employed a different, more ethically contentious definition of death, the so-called “circulatory criterion for death”. “Circulatory death” refers to the permanent cessation of cardiopulmonary function, after which point brain tissue quickly begins to deteriorate (if it hasn’t already).

According to proponents of the circulatory criterion, a patient’s heart will never spontaneously restart after 2 or so minutes of pulselessness. As such, it is seen as ethically permissible to begin organ procurement once this short time period has elapsed. There are in practice different time periods specified by healthcare regulators for when organ procurement can begin (typically between 75 seconds and 5 minutes).

Yet several scholars have criticised the cardiopulmonary definition of death, arguing that the impossibility of autoresuscitation does not necessarily indicate that death has occurred. Critics point out that CPR could still restart a person’s heart even when autoresuscitation has become an impossibility.

The most recent criticism came from Kennedy Institute for Ethics bioethicist Robert Veatch, who wrote an extended blog post on the topic this week. Veatch states:

If one opts for requiring physiological irreversibility, death should be pronounced whenever it is physiologically impossible to restore brain function. Autoresuscitation is completely irrelevant. If autoresuscitation can be ruled out before physiological irreversibility, one must still wait until that point is reached. On the other hand, if it becomes physiologically impossible to restore function before autoresuscitation can be ruled out, death can be pronounced at the earlier point. Either way autoresuscitation is irrelevant.

Scientists from the universities in the Netherlands have successfully created synthetic embryo-like structures from mouse stem cells, raising hopes of new insights into the causes of infertility. The model embryos resemble natural ones to the extent that, for the first time, they implant into the uterus and initiate pregnancy. The research, published this week in Nature, was met with enthusiasm by the scientific community, though some are wary of the idea of creating artificial embryos.

Here’s an excerpt from a Maastricht University press release explaining the new research:

“The early embryo is a hollow sphere formed by less than a hundred cells. It comprises an outer layer of cells, the future placenta, and a small cluster of inner cells, the future embryo. Stem cell lines representing these inner and outer parts were first cultured independently and largely multiplied in the laboratory. Using engineering technologies researchers then assembled them in a recreated environment that triggered their conversation and self-organisation. While observing the process [principal investigator] Dr. Nicolas Rivron noticed that ‘it is the embryonic cells that instruct the placental cells how to organise and to implant in utero. By understanding this molecular conversation, we open new perspectives to solve problems of infertility, contraception, or the adult diseases that are initiated by small flaws in the embryo’...”

MacGill University bioethicist Jonathan Kimmelman said that regulators need to think seriously about the limits that are placed embryo research, in light of these developments: 

“We actually have to think substantively about...how we draw really clear and distinct lines so that we can unlock the scientific potential of this research, while also respecting moral limits on what we should do.”

The protracted legal dispute over the boy's fate reached its climax on Monday, with protesters attempting to storm Alder Hey Children’s Hospital in a bid to have the boy released. Footage showed dozens of angry protesters running towards a revolving door at the entrance of the hospital, with police forming a line to block them. The 200-strong crowd proceeded to form a human roadblock on the main road to the hospital, linking arms and chanting “save Alfie”.

Pope Francis expressed his sympathy for the boy's family in a tweet, writing: "I am deeply moved by the death of little Alfie. Today I pray especially for his parents, as God the Father receives him in his tender embrace".

The Italian government had gone as far as to grant the boy citizenship in the hope that his transfer to an Italian hospital would be approved.

Evans was suffering from an unidentified neurodegenerative disease, and was said by doctors to be in a “semi-vegetative state”. Specialists from Alder Hey Hospital said that “almost the entirety of Alfie’s brain has been eroded, leaving only water and cerebral spinal fluid”. The British Court of Appeal UK has told staff to move the child to palliative care and withdraw life support.

By the end of the week, the boy’s parents appeared to have accepted the court’s decision to discontinue treatment. On Friday, Alfie’s father Tom Evans thanked supporters for their solidarity, but told them “to go home”:

"We are very grateful and we appreciate all the support we have received from around the world, including from our Italian and Polish supporters, who have dedicated their time and support to our incredible fight...We would now ask you to return back to your everyday lives and allow myself, Kate and Alder Hey to form a relationship, build a bridge and walk across it."

British ethicist Iain Brassington criticised the responses of protesters and the Italian government, labelling them “horrible, irrational, indefensible, and – for want of a better word – nuts”. Readers of the blog responded spiritedly to Brassington’s rebuke (see the comments to his article).

Vox News journalist Tara Isabella Burton summarised the debate as a disagreement about whether parents or the state should decide what is in the best interests of a child:

Ultimately, however, the Evans case is about who gets to decide what the best interest of a child really is. When the view of the state and the view of a child’s parents are at odds, who gets to have the final say? The answer ties into wider questions — about medical ethics and what it means for a life to be “not worth living,” and about popular trust, or lack thereof, in the UK’s National Health Service, a paradigmatic example of both the pros and cons of socialized medicine.

In a letter to the European Journal of Epidemiology, researchers from the End-of-Life Care Research Group at the Free University of Brussels admit that “death certificates substantially underestimate the frequency of euthanasia as a cause of death in Belgium and are therefore an unreliable tool for monitoring its practice.” According to a large sample of death certificates, 0.7% of all deaths were described as euthanasia, but the anonymous survey of doctors yielded a figure of 4.6% of all deaths.

To bring the official statistics into line with reality, the researchers recommend that death certificates be revised to make it easier for physicians to list the real cause of death and that they be educated on how to fill out the forms.

So why don’t doctors report that they have helped a patient die through euthanasia (or assisted suicide, which was treated as euthanasia in the survey)? The researchers list several reasons:

... physicians consciously or unintentionally not recognizing their cases of euthanasia as such, because they believe that they have not complied with the legal due care criteria (e.g. not reported euthanasia to the evaluation committee as is required by law), because they have privacy concerns for themselves—as reporting attaches their name to the euthanasia case—and the patient, and because they do not consider it necessary to report it on the death certificate. The lack of clear guidelines is probably also a reason for the low number of euthanasia cases indicated on death certificates.

This research has far-reaching implications for other jurisdictions where euthanasia is legal. “It may be that estimating the number of euthanasia-related deaths will be impossible altogether in some jurisdictions with legal euthanasia,” the authors acknowledge. They single out the Australian state of Victoria, where doctors are not required to list assisted suicide or euthanasia as the cause of death, for fear of patients being denied their life-insurance pay-outs. In Oregon, and other American states which copied their legislation, doctors list the underlying condition as the cause of death, not assisted suicide.

So, instead of official statistics, authorities will be forced to rely upon anonymous surveys like the one from the End-of-Life Care Research Group to uncover the truth of how many people are choosing euthanasia – or even having it chosen for them.

The statistics relate to deaths in Flanders between January and June 2013, so the trend in reporting may have changed since then.

“That injury, I felt like it banished me from a relationship,” he told the New York Times. “Like, that’s it, you’re done, you’re by yourself for the rest of your life. I struggled with even viewing myself as a man for a long time.”

“We are hopeful that this transplant will help restore near-normal urinary and sexual functions for this young man,” says W.P. Andrew Lee, the leader of the surgical team.

A team of nine plastic surgeons and two urological surgeons was involved in the 14-hour surgery on March 26. They transplanted from a deceased donor the entire penis, scrotum (without testicles) and partial abdominal wall.

While it’s possible to reconstruct a penis using tissue from other parts of the body, says Lee, a prosthesis implant would be necessary to achieve an erection, and that comes with a much higher rate of infection. Additionally, due to other injuries, servicemen often don’t have enough viable tissue from other parts of their bodies to work with.

This type of transplant, where a body part or tissue is transferred from one individual to another, is called vascularized composite allotransplantation. The surgery involves transplanting skin, muscles and tendons, nerves, bone and blood vessels. As with any transplant surgery, tissue rejection is a concern. The patient is put on a regimen of immunosuppressive drugs to prevent rejection. Lee’s team has developed an immune modulation protocol aimed at minimizing the number of these drugs needed to prevent rejection. Attaining complete function, including urinary and sexual functioning, could take between six to 12 months.

Apart from the normal ethical issues associated with transplant surgery, this one raised the question of whether testicles should also be transplanted. Very early in their planning the surgeons decided that the answer was No.

“If you were to transplant testicles, that would effectively be making the donor not only a donor of body parts, but also a donor of sperm,” Jeffrey Kahn, director of the Johns Hopkins Berman Institute of Bioethics, told The Verge. “It’s effectively a sperm donation without consent — and that shouldn’t happen.”

And, of course, reports in the media sparked interest in using transplant surgery to enable transgender switches. “Although the procedure is still classified by doctors as experimental, hopes are high for what the procedure could offer trans men in the future,” commented Pink News, a gay website in the UK. According to a New York Magazine blog, Johns Hopkins is “currently” not considering implementing the US$300-400,000 procedure for transgender individuals.

The May edition of the journal Bioethics addresses a range of topics related to ageing, including the meaning of dignity in the context of old age; the ethics of dementia; the nature of vulnerability as experienced by older persons; and the meaning of a “successful” or “flourishing” end to one’s life. Philosopher John-Stewart Gordon, the editor of the special issue, writes that ageing raises a series of “important” and “perennial” issues that are in need of further discussion: “The last phase in human life is as important and valuable as any other period of human existence”.

Two of the papers in the issue offer a phenomenological critique of the concepts of dignity and ageing, with the authors arguing for a more precise definition of the terms that maps on to the lived-experiences of older persons.

Other papers in the edition discuss issues related to the autonomy and welfare of dementia patients.

A special edition of the journal Perspectives in Biology and Medicine addresses the topic of ageing from the perspective of a fourfold taxonomy, namely, ageing “as a time of robust health, of dementia, of frailty, or of advanced illness that ends in death”.

Historian and theologian David Barnard opens the edition with a poignant reflection on ageing as a “mystery”. Barnard argues that the influence of Western individualism and the “technologisation” of human experience has led us to treat ageing and death as a “technical problem” to be “fixed”. Yet according to Barnard, the proper response to frailty is not to seek to obliterate it by conquering aging itself, but rather to accept some of the losses associated with aging as part of the human condition.

Despite the increasingly atheistic nature of Western countries, many people still believe in miracles. In particular, statistics indicate that many people still believe in medical miracles. What’s more, the cases of terminally ill British infants Charlie Gard and Alfie Evans arguably are examples of parents “holding out for a miracle”.

How then, should hospital ethicists respond to miracle invocations by surrogate decision makers?

A new article in the American Journal of Bioethics attempts to provide guidelines for hospital ethicists in their interactions with religious (particularly, Christian) surrogate decision makers. Three American medical researchers -- Trevor M. Bibler (Baylor), Myrick C. Shinall Jr. (Vanderbilt) and Devan Stahl (Michigan State) -- offer “a taxonomy of miracle invocations”, ranging from more personal, authentic invocations of the divine to invocations motivated by a distrust and a loss of faith in the healthcare team treating a patient. They argue that, regardless of what the motivation of the miracle invocation is, clinical ethicists need to exercise show “empathy” and “epistemic humility” when engaging with decision makers:

The model of inquiry we promote paints the ethicist as an open-minded and active collaborator in another’s search for truth...Some ethicists may reject this portrait, but patients’ moral systems often include religious beliefs to which the ethicist must respond—or risk ignoring moral, spiritual, and existential distress...The ethicist’s ability to clarify seemingly opaque concepts, promote precise communication, and elucidate values seems especially important when religious concepts orient a patient’s worldview.

Several commentators respond to the target article, with some suggesting that it falls outside of the role of the ethicist to explore and “shore up” the moral worldview of surrogate decision makers. Some believe that it is the role of chaplains and pastoral care workers to interact with patients at this level.

Former US Surgeon General Thomas Parran was best known for his work in championing a revolutionary public health campaign against syphilis in the United States in the 1930s and 40s. Some say that his initiative saved the lives of tens of millions of Americans -- and transformed the public’s view of syphilis from being a sign of moral weakness to a genuine public health problem.  

Yet recent research has tarnished the influential doctor’s reputation, and even led a US university to consider stripping his name from a major campus building.

Parran has been implicated in the infamous 1932-1972 Tuskegee Syphilis Experiment, a federally-funded medical trial that involved the deliberate withholding of syphilis treatment from hundreds of African-American males. A 2013 essay by two prominent US medical historians suggested that the idea for a syphilis experiment on African American males came from Parran’s writings. Historians Allen Hornblum and Gregory Dober quote several documents that indicate that Parran was contemplating the idea of a Tuskegee-style experiment. In a January 1932 memo, Parran wrote of Macon County, Alabama: “If one wished to study the natural history of syphilis in the Negro race uninfluenced by treatment, this county would be an ideal location for such a study.”

After his retirement from the office of Surgeon General, Parran worked with academics from the University of Pittsburgh to establish a school of public health -- indeed, he was the first dean of the school, and had the school building named after him. But now both students and staff at the university are demanding that the name be changed, labelling Parran’s legacy a “scandal” to new students.

“This isn’t who we are anymore,” Helen Ann Lawless, a second-year graduate student in the public health school, told STAT. “We are still attached to this legacy … we can’t have his name on our building because it venerates him”.

The University has established a committee to consider whether Parran’s name should be removed.

More pushback from the Trump Administration against “reproductive rights” can be seen in the latest Country Reports on Human Rights Practices. The 2017 edition omits a section called “reproductive rights” in which access to contraception and abortion, as well as maternal mortality rates, was sketched out for every country. In its place is a section called coercion in population control which discusses instances of “coerced abortion, involuntary sterilization, or other coercive population control methods”. This is not what supporters of abortion rights mean by “reproductive rights”, which ought to include access to contraception and abortion.

It was the Trump Administration’s first chance to alter the Obama’s Aminstration’s focus on reproductive rights as a fundamental human right. “Reproductive rights are human rights, and omitting the issue signals the Trump administration’s latest retreat from global leadership on human rights,” said a spokeswoman for Amnesty International USA.

The State Department had a different story. A senior official with the Bureau of Democracy, Human Rights and Labor, Michael Kozak, said a discussion of abortion was omitted because there was no international consensus on whether women must have access to the procedure, although there is a consensus on the wrong of forced abortions.

“Reproductive rights,” said Mr Kozak, is “one of the few terms that are used in the report that isn’t derived from an international treaty that has a definition or derived from U.S. law, where there’s a clear definition to the term.

We don’t report on it because it’s not a human right,” he said. “It’s an issue of great policy debate.”

Writing in the magazine Foreign Policy, a Chinese scientist has a gloomy prediction for bioethicists: “China Will Always Be Bad at Bioethics”. Yangyang Cheng, a postdoctoral research associate at Cornell University, believes that the Chinese state is not fundamentally interested in fostering a culture of respect for human dignity. In this environment, observing bioethical norms runs second. He cites a number of issues.

The ethics review process is often a mere rubber stamp and exists more on paper than in reality. Rampant corruption allows dangerous and illegal practices to flourish. Massive social engineering projects ignore the welfare of individuals. The old one-child policy was the most egregious example – but the impulse has not disappeared. Nowadays the government is promoting the “right quality of women” and preventing “new births of inferior quality”.  

Privacy will be non-existent in a society with a strong AI system. “Biotechnology will become a powerful tool in the Chinese security state.” Most concerning of all,” writes Cheng, “is how the Chinese state’s understanding of science discounts the autonomy of an individual body for the collective notion of a strong national body.”

He concludes that China will only observe bioethical principles if it is forced to by the international community – “when its membership in the global political and scientific community depends on it — in other words, when it has no other choice.”

Human brain tissue integrates and thrives in the brains of mice, according to a report in Nature Biotechnology. Using brain organoids created from human pluripotent stem cells, scientists transplanted them into mice. The organoids developed blood vessels within 5 days; by 90 days after implantation, axons had extended deep into the brains of the mice. The neurons were firing in synchronised patterns, suggesting that an active neural network had been established.

The integration of human brain cells into the brains of mice obviously raises delicate ethical questions about the creation of interspecies chimeras. However, the scientists tested the mice and found no difference in their intelligence.

“It brings up some pretty interesting questions about what allows us, ethically, to do research on mice in the first place — namely, that they’re not human,” Josephine Johnston, a bioethicist at The Hastings Center, commented last year. “If we give them human cerebral organoids, what does that do to their intelligence, their level of consciousness, even their species identity?”

If this line of research succeeds, the organoids could be very useful in studying brain diseases and could even be used to repair damage cause by traumatic brain injuries, strokes, and other neurological conditions.

Britain’s Court of Appeal has ruled that 23-month-old British infant Alfie Evans should not be taken to Italy for experimental treatment. Evans is suffering from an unidentified neurodegenerative disease, and is said by doctors to be in a “semi-vegetative state”. His parents had petitioned the courts for permission to take him abroad for further medical treatment, and even approached Pope Francis for support.

Yet the courts rejected the request, saying that “almost the entirety of Alfie’s brain has been eroded, leaving only water and cerebral spinal fluid”. A date has been set by Alder Hey Children’s Hospital for taking Evans off life-support.

Media reports on Thursday indicated that Alfie’s parents have asked the Supreme Court to reconsider the issue.

Oxford-based neonatologist Dominic Wilkinson said that the UK judicial process for resolving end-of-life disputes was too protracted. He argued that a better system can be found in Texas, where disputes of the discontinuation of treatment are resolved by hospital ethics committees.

One such proposal – defended by American bioethicists Franklin Miller and Robert Truog – is that we abandon the dead donor rule for vital organ procurement. If transplant surgeons are able to harvest organs before death, then they will have an increased likelihood of procuring viable, non-damaged organs. Many organs are “lost” as a result of doctors having to wait too long before being allowed to procure them.

Yet perhaps we won’t need to opt for such an ethically contentious solution to the organ shortage. A research team led by biomedical engineers from the University of Oxford have discovered a way of preserving harvested livers that is far more effective than current cold-storage techniques. This new technique may eventually allow us to double the number of liver organ transplants available, some experts say.

Here’s an excerpt from a Nature article on their ground-breaking findings:

The metra device works by supplying the liver with oxygenated blood, anti-clotting drugs and assorted nutrients, all while keeping the organ at a steady 37°C. Because immune cells are removed from the device’s blood supply to avoid inflammation, “the liver is allowed to recover in a very benign environment”, says Peter Friend, a transplant surgeon at the University of Oxford, UK, and co-founder of the device’s manufacturer, OrganOx.

  The trial involved 220 patients across Western Europe whose livers had failed because of hepatitis, cirrhosis, cancer or other causes. Each participant was randomly allocated a donor liver that was either hooked up to the metra machine, or stored on ice — which slows down cellular metabolism to mitigate damage, but makes the organ prone to injury when blood supply returns to the tissue.

  Recipients of livers kept on the device showed a 50% average decrease in levels of an enzyme associated with organ damage, compared with recipients of livers preserved on ice. The rate of early allograft dysfunction — a serious and potentially deadly complication of transplantation — occurred in only 10% of machine-stored liver recipients, versus 30% of those allocated ice-stored ones. (The one-year trial was too short and small to detect any difference in long-term patient survival.)

And now the finger has pointed at Hans Asperger, the Austrian paediatrician who first described a form of autism. For many years, Asperger was regarded as a doctor who defended “misfits” from the Nazis at great personal risk.

However, an historical essay in the journal BMC Molecular Autism accuses Asperger of collaborating with Nazi doctors in some of their worst excesses. Asperger never joined the Nazi party and as an active Catholic his loyalty to the regime was initially suspect. However, after the 1938 Anschluss, he gradually became more involved in some of the Nazi programs and was eventually viewed as “politically irreproachable”. He appears to have helped select victims for a child-euthanasia program as a member of a commission which screened youngsters with mental disabilities. He embraced Hitler’s ideas on race hygiene and eugenics. One of his speeches given shortly after the Anschluss, for example, is a clear endorsement of Nazi ideology: 

The central idea of the new Reich—that the whole is more than its parts, and that the Volk is more important than the individual—had to bring about fundamental changes in our whole attitude, since this regards the nation’s most precious asset, its health.

There is no smoking gun in the evidence marshalled against Asperger to convict him of crimes like the atrocities of Auschwitz, but he was comfortable with Nazi policies. The essay is a portrait of a talented doctor, like many of his contemporaries, who “managed to accommodate himself to the Nazi regime and was rewarded for his affirmations of loyalty with career opportunities.” Perhaps this gives a radically new meaning to "Asperger syndrome". 

Should the condition be renamed? Some say Yes. “We should stop saying ‘Asperger’,” says historian Edith Sheffer. “It’s one way to honour the children killed in his name as well as those still labeled with it.”

Yet Oxford ethicists Luciano Floridi and Carl Öhman argue that we may be acting unethically if we exploit the data of deceased. This material is more than mere property of the deceased person – it is “constitutive of one’s personhood”.

In a paper in Nature: Human Behaviour entitled “An ethical framework for the digital afterlife industry”, Floridi and Öhman  argue that digital remains of the deceased must be treated with “dignity” – they “may not be used solely as a means to an end, such as profit, but regarded instead as an entity holding an inherent value”.

Floridi and Öhman look to regulations already in place for the use of human remains in Museums. They suggest that analogous regulations could be developed to monitor the digital afterlife industry.

“A good model is provided by archaeological and medical museums, which exhibit objects that, much like digital remains, are difficult to allocate to a specific owner and are displayed for the living to consume...A document of particular interest is the International Council of Museums (ICOM) Code of Professional Ethics...As museums often sell and produce replicas of exhibited objects (human or not), the code [...] specifies that ‘all aspects of the commercial venture’ must be carried out with respect for ‘the intrinsic value of the original object’.”

Floridi and Öhman outline a series of draft regulations to which “digital afterlife firms” should conform:

(1) consumers are informed on how their data may come to be displayed postmortem; (2) users are not depicted radically differently from the bot that they originally signed up for; and (3) users only upload data that belongs to them personally, that is, not making bots out of a deceased relative or friend.

In a recent interview with New Scientist, anthro-zoologist John Bradshaw was scathing in his criticism of public health programs involving ESAs.

“When you stroke a pet, your oxytocin and endorphin levels go up, your blood pressure comes down and your heartbeat gets more regular...But there’s no evidence that this translates into anything that lasts even a couple of hours, let alone a lifetime.”

Bradshaw argues that animals may be used effectively to help autistic children learn how to read. Yet programs such as using dolphins to help mature adults overcome depression have no evidential support.

“There’s a huge amount of mumbo jumbo surrounding it... It might be fun, but there are no independent studies that have shown any beneficial effect whatsoever.”

How do intellectually disabled people fare in a country where euthanasia and assisted suicide are legal? Writing in BMC Medical Ethics, Baroness Ilora Finlay and three colleagues conclude that Dutch criteria for euthanasia “are not easily applied to people with intellectual disabilities and/or autism spectrum disorder, and do not appear to act as adequate safeguards.”

Their findings are based on an analysis of six case studies of people who were euthanased between 2012 and 2016 with intellectual disability and three with autism spectrum disorder. The case studies are publicly available. They write:

“Autonomy and decisional capacity are highly complex for patients with intellectual disabilities and difficult to assess; capacity tests in these cases did not appear sufficiently stringent. Assessment of suffering is particularly difficult for patients who have experienced life-long disability. The sometimes brief time frames and limited number of physician-patient meetings may not be sufficient to make a decision as serious as EAS.”

Despite the fact that assessing the capacity of intellectually disabled people is very difficult and a task for specialists, the authors found that only in one of the nine cases was a specialist consulted. This suggests that their requests for euthanasia are poorly understood:

The Dutch cases raise the possibility that the bar for assessment of intractable suffering is set lower for people with an intellectual disability or autism spectrum disorder than for the general population, by considering their long term disability as a medical rather than a social condition. We found no evidence of safeguards against the influence of the physicians’ own subjective value judgements when considering EAS decision, nor of processes designed to guard against transference of the physicians’ own values and prejudices.

In a concluding reflection, the authors observe that the intellectually disabled may be the “canary in the coalmine” in a society where euthanasia and assisted suicide are legal. “It may well be that the ability to use rationality and logic when weighing up the EAS option, and thus decision-making capacity in accordance with standard capacity tests, is impaired in most people affected by the emotional turmoil of terminal illness or suffering caused by chronic conditions.”

“It’s been exceptionally, exceptionally slow,” Kat West, national director of policy and programs for Compassion and Choices, told the Washington Post. “Especially in the first year, there’s usually a lot of interest in learning a lot about these laws. That, we think, has been really dampened and discouraged in D.C. because of these administrative rules.”

Doctors are particularly reluctant to place their names on a government register, even if it is confidential. “They don’t want to be known as the doctor who gives out death prescriptions,” said Omega Silva, a retired doctor and a Compassion and Choices volunteer. According to the Post, no doctors testified in favour of the legislation when it was being debated, and several spoke against it. “Even those who say go ahead and pass the law — they don’t want to participate in it,” G. Kevin Donovan, the director of the Pellegrino Center for Clinical Bioethics at Georgetown University Medical Center, an opponent of the law, told the Post. “They want other people to do it for other patients. It’s very difficult for a physician to directly send their patients to death because everything in their training is to try and do what’s good for their patients.”

The sperm bank at Peking University Third Hospital recently placed an advertisement for donors listing these requirements along with freedom from genetic defects like baldness and colour blindness. Successful applicants – only about 19% -- could earn 5,000 renminbi, about US$800, according to an article in the New York Times.

William A. Callahan, a professor of international relations at the London School of Economics, told the Times that the advertisement reflected the efforts of China’s President Xi Jinping to blend science with ideology.

“Nationalism and socialism are mixing in peculiar ways to promote Chinese identity as a bloodline race,” he said. “The sperm bank announcement shows how the party increasingly dominates Chinese politics, and how nationalism increasingly is defined according to racial purity.”

The ad was mocked on social media and was eventually taken down.

China is not the only country where posthumous conception is an issue. In Israel an informal legal instrument has been created, the “biological will” to cater for the spouses and grandparents of men who died before they were able to have children. The document asserts that “a person who has their semen or eggs frozen would like them to be posthumously used to create offspring”.

This solution, the brainchild of lawyer Irit Rosenblum, is controversial. But as the mother of a young deceased soldier told Der Spiegel, "We worship all these idiots, like Napoleon, people who brought death to so many, instead of praising those who have given life. About 7 million babies worldwide have been born through IVF. Why don't we worship the inventor of IVF?"

Commercial surrogacy contains inherent contradictions about the status of the mother, according to an article in the Journal of Medical Ethics. Jennifer Parks and Timothy Murphy, two American bioethicists, focus on times when the person or persons who commissioned the pregnancy abandon the child. This has happened in a number of widely-publicised cases overseas and in the US. Most of the time, the mother is left with responsibility for the baby, even if it is disabled.

They argue that “Treating commercial surrogates as presumptively responsible for children abandoned by commissioning parents, ... rest[s] on highly gendered assumptions about women and altruism.” Furthermore, “current commercial surrogacy practices face an internal conflict: dematernalising commercial surrogates while sometimes holding in reserve that maternal status as a safety net for unwanted children.” 

There are no tidy solutions, they acknowledge. However, they suggest that preimplantation genetic diagnosis should be included in the contract and that the commissioning parent or parents discuss the possibility of birth defects with the mother. Another strategy would be to assess commissioning parents to see if they would make good parents. “While these strategies may not altogether prevent the abandonment of children born via commercial surrogacy,” they conclude, “they would at least make abandonment less likely, which would work not only to protect the resulting children’s welfare but also that of the surrogates who might otherwise face expectations of care for surrogacy orphans.” 

In a speech on Monday that garnered both criticism and praise, French President Emmanuel Macron told a gathering of Catholic bishops that they should not be afraid to contribute to public debate, saying that Christians bring a valuable perspective on the human person to otherwise secular political discussions.

Speaking under an arch of the famous College of the Bernadins in Paris, Macron said that “the relationship between Church and State [in France] has deteriorated”, and that he wished to “repair it”. He said that the French doctrine of laïcité did not have the function of “denying the spiritual”, and that it was important that people of faith remind society of the transcendent:

“Our contemporaries need, whether they believe or do not believe, to hear from another perspective on man than the material perspective...They need to quench another thirst, which is a thirst for absolute. It is not a question here of conversion, but of a voice which, with others, still dares to speak of man as a living spirit”.

Macron praised the Church for its consistent defence of the vulnerable in society, ranging from the unborn and the elderly to migrants and the poor.

“You consider that our duty is to protect life, especially when this life is defenseless. Between the life of the unborn child, that of being on the threshold of death, or that of the refugee who has lost everything, you see this common trait of deprivation, nakedness and absolute vulnerability”.

The speech appears to be an invitation for the Church to express its opposition to impending bioethics legislation due to be introduced in French parliament by the end of the year. The legislation will seek to make single women and lesbian couples eligible for assisted reproduction, which currently only is available to infertile heterosexual couples in France. It would also reconsider legalizing euthanasia, which is now banned.

Macron’s speech was slammed by influential members of the French intelligentsia, with some describing it as an attack on the of between Church and State.

Some jurisdictions, however, have enacted a ban on the procedure. The operation can be painful, and can temporarily impede one’s capacity for speech.

In a recent post on the blog Practical Ethics, UK lawyer Charles Foster considers the legality and ethics of the procedure.

Foster discusses the case of R v BM, where a Wolverhampton tattooist was found guilty of inflicting grievous bodily harm on a patient after splitting their tongue. Even though the customer consented, the court found that consent was not a defence against having inflicted grievous bodily harm.

Foster argues that the ruling represents a defence of basic human dignity, which transcends the ambit of personal autonomy:

[The ruling] is a salutary reminder that there are limits to the law’s protection of personal autonomy. Factors other than autonomy are in play in the criminal law. I have argued elsewhere that the primary factor (and the foundational factor in the criminal law – in which all other factors, including autonomy, are rooted) is human dignity.

Indeed, Foster argues that in harming another, one does violence to one’s own human dignity:

One might say that X causing injury to Y is doubly culpable because in doing so X outrages not only Y’s dignity but also his own (X’s) dignity...dignity is ‘Janus-faced’.

A recent article in the American Medical Association Journal of Ethics has sparked debate about the practices of crisis pregnancy centres (CPCs) in the US.

The article, "Why Crisis Pregnancy Centers Are Legal but Unethical", claims that CPCs deliberately withhold information about abortion services from pregnant women, and provide misleading information about the risks of premarital sex, contraception and pregnancy termination. The authors, Amy Bryant and Jonas Swartz, say that CPCs masquerade as medical facilities while not being staffed by medical professionals. They argue that the centers should be required to conform to “the ethical standards of licensed medical facilities”.

The article comes in the wake of a Supreme Court challenge to a California law requiring CPCs to display information about State birth control and abortion services.  

Bioethicist Christian Brugger published a scathing critique of the paper, arguing that it was tendentious and based on poor ethical reasoning:

Since [...] abortion is not a medical, therapeutic or morally-valid service to offer anyone, for any reason, failing to provide information about it, or to refer for it, or to conform to abortion-friendly standards; or trying to persuade women away from it in respectful ways; or setting up near abortion clinics to offer life-saving alternatives; or teaching lifestyle habits that help women not to find themselves carrying problem pregnancies, are not only not morally wrong, they are required of any decent citizenry in a free society.

Hawaii has become the seventh American jurisdiction where assisted-suicide is legal. The “Our Care, Our Choice Act” passed  the Hawaii House of Representatives on a 39-12 vote on March 6, and cleared the Senate on a vote of 23-2 this week. Governor David Inge signed the bill on Thursday. “It is time for terminally ill, mentally competent Hawaii residents who are suffering to make their own end-of-life choices with dignity, grace and peace,” he said.

Under the provisions of the new law, the terminally ill may get a prescription for a lethal drug so long as two doctors agree that the patient has no more than six months to live and is mentally competent. He would also need to undergo a mental health evaluation; two separate requests should be made to an attending provider (who could be a nurse, not a doctor); and two witnesses must attest to the patient’s wish to die. Although a doctor could dispense the medication, patients would be required to take it on their own. The patient’s family need not be informed of his decision.

Since 1997, the legislatures of Hawaii, Oregon, Washington state, California, Colorado, Vermont and the District of Columbia have passed laws permitting assisted suicide. In Montana, a court decision found that it was legal, but there has been no legislation.

In the same time ten states have passed laws explicitly banning assisted suicide. The latest was Utah, where the criminal code was clarified to include assisted suicide. It was prompted by a gruesome case in which 18-year-old Tyerell Przybycien helped 16-year-old Jchandra Brown to hang herself and filmed her last moments.

The results were published in the British Journal of Cancer and were based on a survey of physicians in Flanders, Belgium, in 2013. The percentages are based, not on cancer deaths, but on the number of end-of-life decisions for the patients. The classification system may seem a bit odd to non-specialists. If the drugs were given with the explicit intention of hastening death, the decision was termed “euthanasia” if “someone other than the patient at the patient ’s explicit request had administered the drugs”; physician-assisted suicide if “drugs had been prescribed or supplied and self-administered”; and “life abbreviation without explicit patient request” if there had been no explicit request from the patient.  

The reasons for an end-of-life decision included (along with other motives) the “wish of the family” (28%) and an “unbearable situation for relatives” (12.4%).

Since cancer is the disease most often mentioned as a trigger for a euthanasia request, it is not surprising that requests for euthanasia are higher amongst cancer patients.  The authors believe that “in Belgium assisted dying has clearly become a part of medical practice in the care of cancer patients and that the various disciplines of oncology need to be trained in dealing with euthanasia requests”.

The 1.8% of deaths which occurred without explicit request should not alarm anyone about “slippery slopes”, the authors believe. The proportion of such deaths has remained constant ever since euthanasia was legalised in 2002.

However, somewhat confusingly, the authors note that “decision-making took place without the patient’s input in almost 20% of the cases”. These decisions were not necessarily euthanasia; they could have been withholding treatment or aggressive pain relief. But as the authors note, it is still unethical.

A new article in Bioethics criticises policies in neonatal care units that mandate the withholding of treatment from babies born before 25 weeks gestation.

Neonatologist Manya J Hendriks (University Hospital Zurich) and paediatrician John D Lantos (Children’s Mercy Hospital) argue that many extremely premature babies -- babies born between 22 weeks and 25 weeks gestation -- can survive and, indeed, develop healthily if given adequate treatment. Yet many neonatal intensive care units in Europe and North America have policies based on estimated-gestation age (EGA), and these units routinely withhold treatment from extremely premature infants based solely or primarily on the fact that they were born before 25 weeks gestation. Units in France and the Netherlands will typically not intervene in cases where children were born prior to 24 weeks gestation, and in North America there is wild variation among the treatment policies of different units.

According to the authors, EGA-based policies are “contrary to both medical norms and to most theories of justice”. Instead, the authors argue for an “individualised approach” to treatment decisions based upon the likelihood of an intervention’s success.

The criteria for limiting treatment in preemies, as in any patient group, should include a combination of (a) poor prognosis for survival, (b) likelihood of unacceptable disabilities, (c) burdens of treatment, (d) costs and cost-effectiveness, and (e) informed consent and shared decision-making with parents. A just system would apply those criteria to all patient groups. Our current approach of denying treatment to some premature babies when it is provided in situations where it is less cost-effective to patients with a worse prognosis is unjust.

In evaluating current neonatal care policies, the authors speculate that neonates are sometimes seen as “conditional persons” with less of a claim on our health care resources than fully-developed adult human beings. The authors argue that this view is contrary to basic egalitarian principles:

We assert that newborns, even those born prematurely, are full-fledged members of the human community and have the same right to treatment as other humans. This entails giving extreme preterm babies the best possible chance to life. Policies and practices that limit treatment based on gestational age alone violate this basic principle of justice.

A multitude of solutions have been proposed to solve the problem of chronic organ shortages in Western nations. One recent proposal, outlined in an article in the April edition of Bioethics, considers how social media might be utilised to solicit more donations.

Warwick Medical School academics Greg Moorlock and Heather Draper suggest that governments should consider utilising a social media platform akin to Facebook to solicit donations for patients in need of a transplant. Moorlock and Draper suggest that the controlled release of recipient information -- information that takes the recipient from being a “statistical individual” to an “identifiable person” -- could greatly increase the number of organs donated by living donors. The authors write:

One can appeal to people by providing facts, figures, and impartial generalized reports, but something that prompts a stronger and immediate emotional reaction may be more effective at motivating them to provide a solution...using ‘identifiable victims’ within a personalized approach to promoting donation may therefore be an effective way to increase living kidney donation.

The authors do not outline a concrete model for their proposal, though they suggest that a government-run website with donor profiles and contact details would be appropriate.

They caution against a range of pitfalls for a state-run donor-recipient matching service. The website could turn into a “beauty-contest”, and it could also be the unwitting catalyst for an underground organ market (by virtue of donors and recipients covertly exchanging money for organs). Yet the authors suggest that the potential for such a service means that it is at least deserving of further research:

Further research exploring responses to social media organ donation campaigns, as well as motivations behind Publically Solicited Donation (PSD), more generally would be extremely helpful for establishing how our suggested approach could be best used...if implemented correctly, [this approach] could increase rates of living kidney donation without significantly undermining the justice of kidney allocation.

What do we do when we don’t have enough life support machines for critically ill patients? A doctor from Rwanda offers a unique perspective in the latest edition of The Hastings Center Report.

Noah Polzin-Rosenberg, a former Harvard academic who now runs a training program for emergency doctors in Rwanda, describes the agonising decisions that need to be made in his severely underfunded ICU ward, where only two ventilators are available for critically-ill patients. Unlike in Western countries, health care systems such as that in Rwanda cannot afford to offer wide access to critical care for patients.

Polzin-Rosenberg describes one case in which two patients were already using the ventilators, while another patient, a young woman suffering from severe internal bleeding, had just arrived in need of artificial ventilation. Dr Polzin-Rosenberg and his team needed to make the heartbreaking choice between withdrawing artificial ventilation from a patient with a poorer prognosis to support the young woman (who could likely survive given adequate treatment) or alternatively leaving the other two patients on the ventilators and letting the woman die. He writes:

In Rwanda most cases like this end badly. You latch onto a lost cause, spend your social capital pushing everyone to double their efforts, order all the right tests and treatments. But some key part of the system fails and the patient dies anyway. The family has spent the children’s school fees on your orders. You’ve just demonstrated what everyone but you already knew: poor people die from treatable diseases all the time, despite all the good intentions you bring.

In this case, the team chose to keep the two patients on ventilators, while providing manual ventilation to the third. Miraculously, the young woman’s internal bleeding stopped, her breathing became regular again, and she recovered consciousness in a matter of hours.

Polzin-Rosenberg observes that this lucky outcome does not take away the need for a culturally-sensitive ethical framework to deal with difficult allocation decisions:

The temptation is to focus on the thing—the ventilator itself—as the crucial element and press to buy more, mistaking the problem for one of resource scarcity only. But we need a culturally relevant ethical framework to guide the use and withdrawal of ventilators and similar life-sustaining tools...The intangible need for an ethical framework hides beneath apparent scarcity and, when this need is not addressed and luck runs out, one salvageable patient can die for want of a ventilator that serves only to prolong the suffering of another.

Political commentators in the US have clashed over new state legislation that seeks to prohibit abortion on the grounds of Down Syndrome. In an op-ed in the Washington Post early last month, journalist Ruth Marcus argued that legislative moves to ban Down Syndrome abortion were “unenforceable, unconstitutional -- and wrong”. Marcus argued that the decision to terminate a pregnancy based on a Downs diagnosis should “be left to individual women, not to government officials who believe they know best”. She criticised North Dakota, Ohio, Indiana and Louisiana for passing legislation that prohibited abortion based solely on the grounds of Down Syndrome.

In a scathing response, conservative political pundit George F. Will wrote that the real “Down Syndrome problem” is the “ethical complacency” with which people around the world choose to abort trisomy-21 children. Will alerted readers to the near 100% abortion rate of Downs pregnancies in Iceland, describing this feat as a form of “genocide”.

Late last month, American journalism lecturer Tim J. McGuire entered the debate, arguing that, while abortion decisions should remain an individual choice, the decision to abort a Downs child was “just plain wrong”:

Everybody is different in some way, and everybody has a special contribution to make to the world. We enter dangerous ground when we decide some gifts are worth exalting and others are worth destroying.

Trinity International University academic Neil Skjoldal made a similar observation, writing in a blog post that “when we decide who to treat as people, we dehumanize all”.

The New York Times recently ran a feature about the Asian arrowana fish, the world’s most expensive aquarium fish. The cost of a single fish ranges from hundreds of dollars per fish to tens of thousands. A collector from China is said to have purchased an albino specimen for US$300,000. With prices that high Eugene Ng, a Singaporean breeder, can also practice as a piscine cosmetic surgeon.

He gave it an eyelift for the benefit of the NYTimes. “I know some people think it’s cruel to the fish,” says Mr. Ng. “But really I’m doing it a favor. Because now the fish looks better and its owner will love it even more.” 

Other procedures include fin jobs and tail tucks.

American journalist Emily Voight, author of The Dragon Behind the Glass: A True Story of Power, Obsession, and the World’s Most Coveted Fish, says that the arrowana has a special cachet in Asia, even though its popularity dates back only to the 1980s:

In Chinese, the creature is known as lóng yú, the dragon fish, for its sinuous body plated with large scales as round and shiny as coins. At maturity, the primitive predator reaches the length of a samurai sword, about two to three feet, and can be red, gold or green. A pair of whiskers juts from its chin, and its back half ripples like the paper dragons in a Chinese New Year parade. This resemblance has spawned the belief that the fish brings good luck and prosperity — that it will even commit suicide by vaulting from its tank, sacrificing its life to save its owner.

A fish that loyal deserves to have cosmetic surgery!

The Nuffield Council on Bioethics has published a briefing note on whole genome sequencing of babies.

Whole genome sequencing is starting to be used in the UK’s National Health Service in the care of seriously ill babies, and will also become available through commercial companies. The technology can reveal large amounts of genetic information. But this raises questions about how this information will be interpreted, shared with parents, stored and used by others. While costs are falling, interpreting results remains difficult, time-consuming, and expensive.

Whole genome sequencing can help to diagnose a seriously ill baby with a suspected genetic disease, or to predict how a baby will respond to medicines. It could also be used to predict a baby's chance of developing disease in childhood or adulthood, to find out about genetic factors that could affect future siblings, and to contribute to research databases to help better understand genetic disease.

Whole genome sequencing of babies raises important questions about what kind of genetic information should be shared with parents, how parents can be supported to make informed choices, and how genomic information should be stored and accessed by others, such as researchers. Researchers generally agree that direct-to-consumer genetic tests for children should normally be deferred until they are adults.

There are also broader questions about whether increased uptake of whole genome sequencing will change views about genetic variation and disability in society.

The Nuffield Council’s briefing note concludes that:

• Whole genome and exome sequencing has the potential to improve the care and treatment of seriously ill babies.
• The consequences of sharing any additional findings with parents are not yet known, and how genomic data should be stored, accessed, and used requires further public consideration.
• There is ongoing debate about whether genome sequencing could be used to expand NHS newborn screening to include more specific genetic conditions, and how the benefits and harms of screening programmes should be weighed.
• Within the medical genetics community, using whole genome sequencing to look opportunistically for a broad range of conditions and traits in babies who are not ill is widely thought to be unacceptable. However, some parents want to receive a broad range of health-related results from whole genome sequencing and might be able to access such results from commercial companies in future.

Professor Dave Archard, Chair of the Nuffield Council on Bioethics says:

"Genome sequencing technology has moved at an incredible pace, and we are starting to see the benefits that it can offer to patients with genetic disease. But we need to think carefully about how we handle the sensitive information that can be revealed. Babies do not get a say in this, making it especially important that they, and others, are not disadvantaged in their future lives by a decision taken at birth. We need to make sure there are opportunities for public consideration of the challenges."

A self-driving Uber vehicle has hit and killed a pedestrian in United States, raising concerns about the regulation of new autonomous vehicle (AV) technology.

Elaine Hertzberg was struck down late on Sunday night in Tempe, Arizona, after accidently stepping in front of an AV vehicle -- an Audi SUV -- travelling at approximately 60 kph.

The vehicle’s front sensor failed to detect the woman, while a safety driver present in the car was not watching the road.

Uber has announced an immediate halt on its AV trials across North America after the incident, and police are investigating. Legislation currently being discussed in Washington will look to introduce federal safety standards for the use of AV technology.

Some analysts suggest that regulations of self-driving vehicles need to be stronger. “Moving too quickly could put lives at risk and set back a technology that could ultimately help reduce the number of people killed and injured on the roads each year”, wrote Will Knight of the MIT Technology Review.

Others suggested that fatalities are inevitable -- albeit far less likely -- with self-driving vehicles. The Economist argued that, while self-driving vehicles will reduce the number of fatalities, “the sad truth is that there are bound to be fatal accidents on the road to a driverless world”.

These robot vehicles have a link to bioethics, especially to the well-known utilitarian trolley problem. After all, someone has to program them to make “decisions” about what to do when faced with conflicting choices.

Last year the German Federal cabinet adopted 20 recommendations by the Ethics Commission on Automated Driving, as a basis for the local car industry to advance its driverless technology. But it noted that “at the level of what is technologically possible today […] it will not be possible to prevent accidents completely. This makes it essential that decisions be taken when programming the software of conditionally and highly automated driving systems.”

Something like this exists in Australia (Philip Nitschke’s Final Exit International); the UK (ditto); and the United States (Final Exit Network). And now a similar group has emerged in the Netherlands.

The Dutch Public Prosecutor has opened a criminal investigation into the Last Wish Cooperative (Coöperatie Laatste Wil) , which claims to distribute a deadly powder to people who want to commit suicide. Despite the notoriety of Dutch end-of-life legislation, assisted suicide without the help of a doctor is strictly illegal. But after a 19-year-old girl killed herself with a lethal powder last month, public attention has focused on CLW’s activities, even though it appears that she did not obtain the substance through CLW.

CLW announced last September that it would make available a suicide agent, which it called “X”, to its members. Therefore the public prosecutor suspects that CLW members are “participating in an organization that aims to commit crimes”. 

According to its website, “Cooperative Last Will accommodates people who favour the concept of assisted suicide and self-euthanasia without intervention of doctors and want to make early preparation by joining with others who share their views.”

There appear to be links to Australian activist Philip Nitschke. He lives in the Netherlands and his book The Peaceful Pill Handbook is recommended by CLW. He enthusiastically welcomed CLW’s announcement:  

“With the wide, legal availability of this new drug, no one will bother with a restrictive euthanasia legislation that requires people close to death to obtain permission from a doctor to die. When the time is right, people craving a peaceful death, will simply take this new drug. No one will bother with the legislative safeguards in new proposed legislation, when this product becomes available.”

Perhaps the prime force behind the emergence of CLW (and the other organisations) is euthanasia fundamentalism. Several groups promote euthanasia in the Netherlands, but always within the limits imposed by the law. Fundamentalist groups believe, however, that no restrictions are ethical; access to the means for suicide is a universal human right.

It’s interesting to note that the spokeswoman for CLW is Petra de Jong, a distinguished doctor who formerly served as director of the Dutch Association for a Voluntary End of Life (NVVE), which operates within the law. She was even made a Knight in the Order of Orange-Nassau for services to euthanasia. Perhaps she now feels that the Dutch law, however liberal it may seem to outsiders, is too restrictive.

A leading doctor has called for a hundred-fold increase in government-funded bariatric surgery for teenagers as the only way to save the United Kingdom from an “obesity apocalypse”.

Professor Russell Viner, the new president of Royal College of Paediatrics and Child Health, said that this would be the only way to save them from the “vicious cycle” of a poor diet and bad health.

He also called for a ban on TV advertisements selling unhealthy foods before 9pm and school inspections to assess how they help pupils' health.

Speaking to the Daily Telegraph, Professor Viner said: 

“There are two great epidemics affecting our children and young people - obesity and mental health problems, and in some ways they are linked. In a sense they are new horsemen of the apocalypse. We used to have famine, pestilence and so forth - famine now we've largely conquered and now we have the opposite problem - that of feast.”

Professor Viner told the media:

“Becoming overweight or obese is easy, especially in 21st century Britain. Portion sizes have creeped up and unhealthy food and drink is promoted everywhere – on the streets, on television, social media and on in shops – and it is at rock bottom prices. We need a culture that promotes healthy living. We strongly urge Government to go bold with their new obesity strategy.”

The topic of complicity, or cooperation in evil, poses a particular problem for the utilitarian ethics which currently predominate in bioethics journals. Surprisingly, but consistently, Peter Singer, the doyen of utilitarianism, ended up defending the guards of Auschwitz in his recent book The Most Good You Can Do.

“Strictly utilitarian effective altruists … would have to accept the implication that, on a plausible reading of the relevant facts, at least some of the guards at Auschwitz were not acting wrongly.”

Right or wrong, this judgement does not square with the moral intuition which led a German court to sentence a 94-year-old bookkeeper to four years in jail for facilitating mass murder at Auschwitz in 2015.

The problem of complicity is alive and well for international NGOs like Medecins Sans Frontieres. In a recent article in the Journal of Medical Ethics, several of its staff and an ethicist at the British Medical Association tackle the tricky issue of how MSF (and other NGOs) should behave when their humanitarian activities also give effective help to oppressive regimes. They give three examples of MSF’s work amongst Rohingya refugees, with Syrian refugees in Jordan, and in Libya.

The academic literature on complicity is surprisingly well-developed, with many distinctions and sub-headings -- conspiracy, co-operation, collusion, connivance, condoning, consorting, contiguity, dirty hands, spattered hands, etc. However, the authors are interested in examining whether the use of the concept of “complicity” is enough to evaluate the morality of an NGO’s decision to stay or leave, cooperate or stand aloof.

They argue that at least a utilitarian understanding of complicity, such as Singer made, which balances good outcomes against bad, is not enough. However, this might lead to another moral problem: moral narcissism. This is “the possibility that where humanitarian actors inadvertently become implicated in wrongdoing, they may focus more on their image as self-consciously good actors than on the interests of potential beneficiaries”.

Somewhere in the middle is the grey area in which well-intentioned NGOs operate.

So, they maintain, intentions do need to be taken into account – which are anathema to a utilitarian calculus. Citing Bernard Williams, the contemporary British moral philosopher who was a formidable foe of utilitarianism, they say

“moral agents have good reasons to seek to realise their (good) personal projects and, at times, their commitment to these projects will be in tension with the demands of utility. There can be something incompatible between the demands of personal integrity—our virtuous desire to realise our self in the world—and the demands of consequentialism.”

The moral responsibilities of NGOs may seem like an arcane discussion but it could shed some light on today’s increasingly bitter disputes over conscientious objection to abortion, euthanasia, and the like.

Guernsey could be the first place in the British Isles to legalise assisted suicide. Better known as a tax haven, the tiny island off the coast of Normandy, has only about 65,000 residents. The island’s chief minister, Gavin St Pier, is backing a bill in the Bailiwick’s 40-seat Parliament based on the Oregon model. It is due to be debated in May.

The bill permits people who are terminally ill, mentally competent and have less than six months to live, to end their lives with the help of a doctor.

Mr St Pier, whose father died a distressing death from cardiovascular disease nine years ago said: “This is about giving people choice and a sense that they have some control themselves, rather than being frightened, out of control and in the hands of others.”

Strictly speaking, Guernsey is not part of the United Kingdom, but its relations with its Channel neighbour are so close that the bill raises the prospect of Guernsey becoming a suicide destination.

However, as a British Crown dependency, major legislation has to be approved by the UK Parliament, which may not look kindly upon an offshore suicide haven.

The local branch of the British Medical Association is opposed to assisted dying and the island’s local branch and warns that legalisation could lead to problems recruiting and retaining doctors

“Doctors need to be registered with the General Medical Council in the UK in order to practice medicine. The GMC offer excellent guidance for doctors on assisted suicide requests from patients and makes it clear it is a criminal offence for anyone to encourage or assist a person to commit suicide. As doctors need to remain GMC members to work in Guernsey a unilateral change in legislation in Guernsey would make it difficult to understand how these two conflicts could be reconciled.”

The idea of a slippery slope for euthanasia is mocked by supporters.  But in a recent opinion piece in the Bioethics Forum of The Hastings Center, one of America’s most respected bioethicists endorses it. In a brief opinion piece, Daniel Callahan, the co-founder of The Hastings Center, the world's first bioethics research institute, and the author or editor of 47 books, writes:

I have been opposed to physician-assisted death for well over 30 years. ....

I came into the debate with wariness and curiosity. On the one hand, my work on end-of-life care and the emergent hospice movement made clear that many deaths could be painful, psychologically traumatizing, and messy. I could well understand interest in that problem, but I wondered why the growing hospice program was not enough. What was to be made of the zealotry of proponents for euthanasia or physician aid in dying? I was especially curious about their long-term aspirations.

I also became interested in the pressures that medical progress was putting on care of the dying. Most notably, it has been increasing the possibility of medical efforts to incrementally find ever more ways to keep the sick and dying alive. The logic of medical progress has an unpleasant feature. It is the gradual movement from short lives and quick death to longer lives and extended dying. The quick deaths from heart attacks in my parents’ generation have given way to longer lives and Alzheimer’s disease. Is that progress?

Interest in assisted death comes, in part, from a culture of medical progress that does not know how to stop extending our lives. Medicine is particularly good in extending our dying—and much of that extension is in old age. I believe that the care of the elderly is rapidly coming to be a crisis for many countries, rich and poor. Inevitably, this crisis has also meant a growing attraction to assisted death. Some studies show that suicide rates are especially high in countries with low birthrates, rapidly aging populations, and significant health care and caretaker costs. The U.S. may not be spared.

My introduction to the Dutch scene in the late 1980s was to see a slippery slope in the making, first in the Netherlands and then in other countries. In Belgium, for example, euthanasia is now legal for terminally ill children, as well as for adults who have mental illness and dementia, and who are “tired of living.” The loosening of restrictions on who qualifies for euthanasia is evidence of the high value placed on individual autonomy in determining the time and means of death. It is a concept with no inherent limits.

A controversial new documentary has been released in the US telling the story of an Oregon couple who took their own lives via lethal medication in April 2017.

The documentary recounts the story of Charlie and Francie Emerick, 88 and 87 respectively, who last year applied to the Oregon Health Authority for a lethal prescription after being diagnosed with terminal illnesses. Charlie was suffering from advanced Parkinson's Disease, and Francie had battled for several years with lymphoma.

The Emericks died at home in April 2017, surrounded by family. They had been married for 66 years.

“They were each other‘s best friend,” Jerilyn Marler, their eldest of the couple’s three children, told reporters. “In their last years, Dad was Mom’s eyes and Mom was Dad’s ears. It was natural for them to want to die together”.

The documentary presents the couple’s decision in a very favourable light, though some close friends and relatives disagreed. Bioethicist Thaddeus Mason Pope speculated that they may have been the “first couple” to take their lives together under Oregon’s Death with Dignity law. Nearly 1,300 people have died in Oregon via lethal prescription since the enactment of the law in 1997.

In a new article in the Journal of Medical Ethics, researchers from the National Institutes of Health offer an insightful analysis of one of the most controversial cases of euthanasia to have occured in the Netherlands.

Bioethicists David Gibbs Miller, Rebecca Dresser and Scott Kim analyse the official medical records of a severely demented woman who was euthanized in Holland in 2016. The woman, who was in her 70s, had her life ended by a geriatrician in aged care facility after having written an advance directive indicating her wishes for receiving euthanasia.

The advance care directive was written several years before her death, and there has been much discussion about whether it remained binding.

The most controversial feature of the case, however, was the manner in which the woman was euthanised. The supervising doctor mixed sedatives into the coffee of the woman without her knowledge. When the sedatives did not work, the doctor administered a stronger drug subcutaneously.  

While the doctor was administering the lethal dose, the patient tried to get up and had to be restrained by family members.

The authors observe that there is insufficient scrutiny of the process by which Advance Care Directives are prepared:

...physicians and the RTE [Dutch regional euthanasia review committees] accept a low threshold of decisional capacity for preparing AEDs. The RTE’s Code of Practice states that in early dementia, "the patient generally…is decisionally competent in relation to his request for euthanasia". This apparent presumption of capacity in early AD (and in the case [of this patient], a much more advanced state) is incompatible with existing data on Alzheimer’s disease and decisional capacity.

The authors also question whether an Advance Care Directive should override the contemporaneous wishes of a severely demented patient:

The failure to provide adequate protection to a vulnerable patient was exacerbated by the failure to respect her contemporaneous interests and statements. By privileging the AED as the expression of Mrs A’s ‘real self ’—a judgement that itself was dubious in light of her questionable capacity and understanding when she made the AED—physicians failed to protect her … when they disregarded her contemporaneous statements and actions.

India's Supreme Court has handed down a landmark ruling authorising the use of “living wills” and streamlining the process for the withdrawal of treatment from dying patients.

The ruling -- which was in response to a plea made to the court by the public interest group "Common Cause" -- allows adults to write an advance directive indicating that they do not wish to receive life support if in a comatose or permanent vegetative state. The five-judge panel also outlined a process by which doctors and family members could apply through the courts to have life support withdrawn from a terminally ill and incapacitated patient.

The ruling comes three years after the death of Aruna Shanbaug, an Indian nurse who had been in hospital in a persistent vegetative state for over four decades, after being raped and strangled in 1973. Shanbaug was at the centre of a nationwide debate over the ethics and legality of the withdrawal of treatment.

“This is an important, historic decision, which clears the air,” said supreme court lawyer Prashant Bhushan.

“Everybody will breathe a sigh of relief, because people were earlier apprehensive that if they withdrew life support, they could be prosecuted for culpable homicide,” he added.

Notorious former pharmaceutical executive and social media personality Martin Shkreli has been sentenced to seven years in prison, after being found guilty of defrauding investors.

On Friday, Shkreli wept in court as district court judge Kiyo Matsumoto handed down the sentence, which was more lenient than than the 15 years that prosecutors hoped for, but more severe than the 18 months requested by the defence.  

Shkreli was the co-founder of several hedge funds, the founder of biotech company Retrophin and the founder of the pharmaceutical company Turing Pharmaceuticals. He received widespread criticism in 2015 after he raised the price of the HIV-AIDS drug Daraprim by a factor of 56 (from $13.50US to $750US).

The crimes for which Shrekli was convicted -- two counts of securities fraud and one count of consiring to commit securities fraud -- were unrelated to the Daraprim controversy.

Judge Matsumoto questioned Shkreli’s remorse, citing some of the 34 year-old’s social media antics following his conviction. Shkreli’s bail was revoked in September after he offered his online followers a $5,000 bounty if they could obtain a lock of Hillary Clinton’s hair.

The judge also ordered Shkreli to forfeit $7.3 million in a brokerage account and personal assets, including a one-of-a-kind Wu-Tang Clan album that he boasted of buying for $2 million.

Shkreli told the court that he was very sorry for his actions, and apologised to his investors.

"I am terribly sorry I lost your trust," he said. "You deserve far better."

In a new article in The Philosophical Quarterly, State University of New York philosopher Monika Pitrowska attempts to offer an account genetic parenthood that deals some of the complexities of the parent-offspring relationship. According to Pitrowska, there are three criteria that must be met for something to count as genetic parenthood: overlap, development, and persistence.

Readers may consult the article for a full development of the argument. Yet to provide a basic summary, Pitrowska argues that mere genetic similarity, or causal relationships between parents and children, are insufficient as a definition of parenthood. An vital feature of genetic parenthood is the passage of genetic material from one generation down through several successive generations. Pitrowska develops an definition that tracks this specific feature of parenthood.

As Pitrowska observes, the question of genetic parenthood is more than an esoteric, philosophical matter. While assisted reproduction has transformed society’s understanding of the family unit, our concern to know our genealogy remains. Furthermore, in a world where we are questioning whether mitochondrial replacement therapy creates three parent babies, or whether surrogates have a genetic link to the children they bear, it is important to achieve conceptual clarity.

Not even the staff of the controversial CIRM were inclined to boast about the return on investment for Californian tax-payers. Proposition 71, which voters approved in 2004, authorised a $3 billion bond issue to finance the CIRM. Instead, the CIRM’s communications director described it simply as “a little piece of history” and wrote on its blog that:

Maria Millan, CIRM’s President & CEO, says the amount of the payment is not the most significant part of this milestone – after all CIRM has invested more than $2.5 billion in stem cell research since 2004. She says the fact that we are starting to see a return on the investment is important and reflects some of the many benefits CIRM brings to the state."

However, the CIRM’s critics were scathing.

John M. Simpson, of Consumer Watchdog, said, “Once again it’s clear that Proposition 71  was oversold by its sponsors. Despite campaign hype, it’s only now that we are seeing the first royalty payment and a rather modest one at that."

Bernard Munos, a senior fellow at FasterCures. told  California Stem Cell Report, an invaluable source of information on the agency:

"The $200,000 check from City of Hope should be acknowledged, but it only represents 0.02% of the $1.1 billion in royalties that were promised to California taxpayers -- and does not even cover the annual salary of CIRM’s part-time vice chairman.

And Marcy Darnovsky, executive director of the Center for Genetics and Society, told California Stem Cell Report:

"Many Californians voted to establish CIRM because they believed the promises that its backers were making: that we'd soon see revolutionary medical breakthroughs, that our state would get back a billion dollars or more in royalties, that the agency would be run by an 'independent' board. Almost a decade and a half later, none of that has come to pass ...

"The royalty check ... is less than a drop in the bucket. It's almost as if you loaned someone $3000 (at your own expense) because they promised to do some good work and pay you back $1000. Years later, they haven’t finished the work but they are offering you twenty cents instead of $1000, and asking for thousands more."

During the campaign for Proposition 71, supporters strongly argued that destructive research on human embryos was absolutely necessary for the science to proceed and that cures would certainly come. Almost 14 years later, there have been no cures. The royalty cheque was for a potential therapy for glioblastoma, a deadly brain tumour – but even this not on the market yet. Thus far, it has only passed Stage I clinical trials and been written up in glowing terms in O, The Oprah Magazine.

Or so argue Giulia Cavaliere and César Palacios-González, of , King’s College London, in the Journal of Medical Ethics. Their reasoning is quite interesting. (It is spelled out a bit more simply in a blog post.)

First of all, against the headlines about “cures” for desperately ill children, they insist (as did many opponents of MTR) that

no MRTs can be considered therapeutic as they do not cure children/embryos affected by mtDNA diseases, but they are rather a means to create children that are not affected by mtDNA diseases.

Second, they ask, if “cures” are not the reason for the existing legislation, what is? Their answer might have escaped the MPs who votes for it, but it fits:

the rationale to offer MRTs is to allow women at risk of transmitting mtDNA disease to have healthy children that are genetically related to them. The rationale, in other words, is to expand these women’s reproductive freedom ...

Third, if reproductive freedom (and not the health of a child) is the most fundamental reason, then all women deserve to take advantage of MTR, not just the mothers of sick children. Lesbian couples are equally needy and deserving.

Providing access to MRTs to women at risk of transmitting a mtDNA disease and not to lesbian couples is in our view contrary to one of the tenets of morality, which demands to treat like cases alike. Denying access to MRTs to lesbian couples is morally unjustifiable in as much as it curtails the enjoyment of certain freedoms to a certain group without good reason, whilst allowing others to enjoy the very same freedoms.

Some bioethicists would call this the slippery slope in action. Others would respond that it is merely extending the inherent logic of the legislation. In any case, it certainly is an unexpected interpretation of the legislation.

But in a measure of how enthusiastically Canada has embraced euthanasia, one prisoner has already been killed under its Medical Aid in Dying (MAID) law, and three others have been approved. According to a report in CBC News, the death took place in a hospital outside of the prison, under the supervision of two correctional officers.

Correctional Service Canada (CSC) told CBC News that it had, to date, received eight requests for MAID.

CSC is now permitted to organise MAID in a community hospital — but it can also take place in a penitentiary regional hospital or treatment centre in exceptional circumstances and at the request of the inmate.

Correctional Investigator Ivan Zinger criticised the possibility of inmates being euthanised in a prison in a letter to the CSC head:

"Practically and perceptually, I simply can not imagine a scenario where it would be considered acceptable to allow an external provider to carry out a MAID procedure in a federal penitentiary,"

Zinger said that MAID should occur only outside prisons. A prohibition on MAID within prisons would protect the integrity of the system now and in the future, when eligibility for assisted death could expand to prisoners suffering from acute psychiatric illnesses – and in prisons there are a number of these.

Three members of the Centre for Genetics and Society, a California-based lobby group, have published a stern critique of germline modification on human rights grounds. Writing in Open Global Rights, Marcy Darnovsky, Leah Lowthrop, and Katie Hasson argue that changing the genome “would violate human dignity, a concept at the core of human rights”.

it’s important to remind ourselves why key human rights documents specifically prohibited these practices, long before they were technically feasible. The medical justifications for human germline modification fall short, and the temptation to “enhance” future generations is profoundly dangerous. Down that road, our scientific achievements would all too likely become not instruments of enlightenment and emancipation, but mechanisms for exacerbating inequality. And our desire to improve the human condition would lead us away from the realization of the human rights that we know are needed for individuals, societies, and humanity to thrive.

The rapid pace of these developments creates an urgent need for the global community—perhaps gathering under UN auspices—to reaffirm existing agreements and clearly prohibit the dangerous and unethical use of reproductive gene-editing.

The Code of Ethics for Researchers encourages scientists not just to avoid negligence and harm, but also to consider the extent to which their research contributes valuable knowledge to some discipline or other, and whether their work has some practical impact on the general public. The code asks researchers to consider, for example, whether they are “pursuing the truth” by “following the reaearch where it leads, rather than confirming an already formed opinion”.

There are seven sections within the document, each beginning with a principle like “minimize harm” or “support diversity”.

The code has been received well by many within the scientific community, and Nature magazine has gone as far as writing an editorial exhorting readers to examine how their own practice measures up to the code:

[The purpose of the code] is to stimulate open conversations “to safeguard a positive and sound research environment”. Accordingly, Nature readers may do themselves and others some good … [if they] discuss the ideals expressed, and consider how to live up to them in their own lab, research institution or funding agency. We at Nature are trying to do so, too.

While some see this moral awakening as a positive sign, others are sceptical of the code’s ability to change practice. Speaking at the World Economic Forum earlier this year, UC Berkeley bioethicist Jodi Halpern said scientists need to be taught how to think ethically:

"People need rigorous education in ethical reasoning, which is just as rigorous as science education... I’d like to have every doctoral student…pass a rigorous exam showing how they would deal with certain ethical dilemmas. And everybody who will be the head of a lab someday will have really learned how to do that type of thinking.” 

In an interview with Variety magazine last week, singer and actress Barbara Streisand opened up about cloning her long-time soul-pet Samantha for US$50,000.

Samantha passed away in 2004, but Streisand couldn't stand the thought of living without him -- so she tried to keep a little bit of him alive:

I just wanted to keep her with me in some way … Sammie’s doctor took some cells from insider her cheek and the skin on her tummy just before she died. And we sent those cells to ViaGen Pets in Texas...

The cloning process unexpectedly produced four puppies, but Streisand gave two away to friends and kept the other two.

Each puppy is unique and has her own personality. You can clone the look of a dog, but you can’t clone the soul.

Still, every time I look at their faces, I think of my Samantha … and smile”.  

Viagen Pets has cloned thousands of animals over the last 15 years, and the company reports that it has a waiting list. “Pet’s lives are very short compared to ours”, Viagen manager Melain Rodriguez said. “So if you can clone that pet and have another one that is very similar, it’s very rewarding”. 

The UK’s Department for Health and Social Care has released new guidelines advising that children born via surrogacy be told of their origins.

The guidelines, released last Wednesday, are intended to “ensure LGBTQ+ individuals are given equal care, and that all surrogates and intended parents are treated with due dignity and respect”. The document states:

Research suggests that openness, confidence and transparency about a child's origins from an early age (pre-school) is the best way to talk to children about their identity and origins. Your fertility counsellor should have given you the opportunity to explore how you feel about telling a child about their origins, and fertility counsellors would be happy to help you reach a decision about this at any time, as your thoughts and feelings about if, when and how to do this may change over time.

The document also tells healthcare workers that parents should be accommodated in maternity hospitals alongside a surrogate mother:

Wherever possible, it may be advantageous for surrogates and IPs [intended parents] to be accommodated away from the other mothers on the post-natal wardd to maintain privacy at a sensitive time.

Restrictions on visiting hours and overnight stays have “been found to be an issue for male, same-sex IPs”.

Jackie Doyle Price, Parliamentary Undersecretary for the Department of Health, said that the new guidelines balanced “the need for emotional support with clear legal explanations, for surrogates and intended parents alike”. 

Dr John Lee, the FIAMC president, claims that the WMA has “plans to introduce two policy measures to facilitate worldwide abortion and euthanasia by curtailing doctors’ conscientious objection”. In an open letter to the WMA leadership he writes:

a revision is being considered to the Declaration of Oslo on Therapeutic Abortion (2006). The proposal put forward by the Working Group on Abortion Policy (WGAP) explicitly requires referral and also requires that the physician who objects must nevertheless provide “safe abortion” in some circumstances.

Member associations in Canada and the Netherlands have also requested changes in the WMA’s policy on euthanasia which would state that euthanasia is a matter for an individual doctor’s conscience. Dr Lee warns that this opens the door to dragooning doctors into a euthanasia regime:

By saying that the WMA does not condemn physicians who perform euthanasia where it is legal, the WMA is saying that euthanasia can be ethical if it is legal. For Canada and the Netherlands, with now the most liberal euthanasia laws in the world, to ask the WMA to be neutral on the ethics of assisted suicide and euthanasia is to invite legalization in additional countries.

Based on the Canadian experience, acceptance of the ethical neutrality of medically-assisted death has resulted in almost immediate challenges for physicians who are unable to refer because of moral, religious, or ethical concerns. It is a serious problem, with physicians put in the impossible position of having to choose between their conscience and being allowed to continue to care for their patients...

The threat to medical ethos, predicated as it is on respecting life without equivocation, will cause irreparable damage to to the practice of medicine and undermine the standard of care. Doctors who have exercise their right of conscientious objection to abortion and euthanasia will find themselves victims of coercion by their professional societies and the State. Their commitment to heal the sick and to provide comfort to the dying will be undermined, as they are forced motivation to violate their conscience or leave the professional altogether. This oppression of the silent majority by the vocal minority cannot end well.

After the shooting at Marjory Stoneman Douglas High School in Parkland, Florida, where 17 people died, America has been convulsed with arguments about gun control. Where is the input from bioethicists, asks Craig Klugman, of DePaul University.

Although gun-related violence is a major public health issue in the United States, Klugman complains that bioethicists have shown little interest in it. He searched PubMed for “bioethics” plus “gun,” “firearm,” violence,” or “control” and found only handful of articles and blog posts.

Bioethics is supposed to be the great facilitator of moral discourse on issues of health in the modern era. After all, we came into being as activists to bring autonomy into medical decision-making, to bring to light wrongs in human subjects research, and to help people make difficult health care decisions, usually difficult because of the existence of a new technology. Bioethics has taken a public role, applying ethical analysis and discussion on issues in the public arena in such areas as human subjects research, stem cells, cloning, neuroscience, Ebola, secondary findings, genome sequencing, synthetic biology, abortion and much more.

Our expertise is in facilitating difficult conversations and moral deliberations. We can provide strong ethical analysis, engage in debate and conversation, weigh arguments, and help create consensus. These are valuable tools in the hospital and they are valuable tools in the public.

While bioethics has been criticized for shying away from issues of public health and social justice, the discourse on firearms is near silent. It is time for that silence to end.

Several grass-roots biohacking organisations have surfaced in the US in recent years, including biophysicist Josiah Zayner’s company The Odin. Zayner aims to make experimental biotechnologies available to the public – particularly equipment for genetic engineering. Some of his most successful products include a bacterial CRISPR and fluorescent yeast kit for making glow-in-the-dark beer, and a genetic engineering home lab kit (sold for just a touch under US$2000). In a recent interview with The Atlantic, Zayner commented:

One of my big problems with academic and medical science is [that] lots of stuff...won’t be available to the general public for 10, 20, 30, 40 years...How do you expect this technology go forward if they aren’t testing, playing around it?

What is too early and what is too late? I don’t know if there’s an answer. I don’t know if I’m the correct one to ask that question. But maybe activists putting this knowledge out there, letting people know how easy and accessible it is, can spur people to push this stuff.

Critics of the biohacking movement say that many of the experiments performed are extremely dangerous, and promote irresponsible research practices. The US Food and Drug Administration recently issued a harshly worded statement cautioning consumers against DIY gene-therapy kits and calling their sale illegal.

Last October Zayner himself injected his arm with DNA encoding for CRISPR that could theoretically enhance his muscles—in between taking swigs of Scotch at a live-streamed event. He later said he regretted the stunt. “There’s no doubt in my mind that somebody is going to end up hurt eventually”.

Earlier this month, Aaron Traywick of Ascendance Biomedical – another biohacking company –injected himself with an untested herpes treatment at an event in Austin, Texas.  

Earlier this month BioEdge reported on a court case involving a 28-year-old Japanese man, Mitsutoki Shigeta, who is believed to have fathered 15 children via surrogacy in Thailand. Authorities had taken Shigeta’s children into custody after concerns were raised about their welfare.

Since then, the court has returned custody of 13 of the children to Shigeta, saying that he  demonstrated that he is financially stable and had showed his plans to care for the children. The court said he had a right to custody because the children were born before the introduction of a new law prohibiting commercial surrogacy, and because the surrogate mothers signed documents waiving their custody rights.

Shigeta is the son of Japanese tycoon Yasumitsu Shigeta, founder and chief executive officer of the Japanese communications and technology company Hikari Tsushin. He earns approximately earns over 100 million baht ($3.1 million) in annual dividends, according to a statement released by the court.

Shigeta, who has kept an extremely low profile, did not attend the court’s sessions. A Thai lawyer represented him.

Shigeta told the court via video-link that he wanted to have a large family with which he could share his sizeable inheritance.

Others have offered a different story. Mariam Kukunashvili, founder of the New Light clinic that recruited some of the surrogate mothers, said Shigeta told her “he wanted to win elections and could use his big family for voting”.

“He said he wanted 10 to 15 babies a year, and that he wanted to continue the baby-making process until he’s dead,” Kukunashvili told the Associated Press in 2014.  

Sam Everingham, global director of the charity Families Through Surrogacy, said that the case was extraordinary and worrying. “It does cast surrogacy in a bad light when agencies or parents can get away with having this many children in one country”. 

A group of medical researchers from Emory University recently conducted a survey on this topic involving over 750 Americans. According to the researchers, the main deterrent for organ donation is a misperception that one will receive inadequate medical care if registered as an organ donor.

The results of the survey, published in the Journal of the American College of Surgeons, also indicated several other factors that deterred people from donating. These include thinking there was an increased cost for the donor family when donating organs and thinking a famous person would get higher priority on the waitlist than others.

Of the respondents, 84.6 percent were willing to donate, 76.2 percent were female, 79.7 percent were Caucasian and 16.5 percent were African American. The respondents represented 37 states.

"Educating the public regarding these and other misperceptions is desperately needed," says Dr Marty T. Sellers of Emory University School of Medicine, the lead author of the paper. "With education, we believe this would convert more eligible donors into actual donors, which would shorten waiting times and allow transplantation earlier in a disease process. It would also lead to less pre- and post-transplant mortality; many living donors would be spared the risks associated with donating; and overall costs associated with transplantation would decrease."

Ireland will go to the polls on May 25 to vote on the country’s constitutional ban on abortion, as both pro-life and pro-choice organisations intensify their campaigning.

Earlier this week health minister Simon Harris was given approval to draft a bill that would delete the controversial 8th constitutional amendment, and replace it with a new article enabling the parliament to regulate abortion services in Ireland.

Currently, the constitution contains the following passage which is understood to prohibit abortion except in cases where a mother’s life is at risk:

The State acknowledges the right to life of the unborn and, with due regard to the equal right to life of the mother, guarantees in its laws to respect, and, as far as practicable, by its laws to defend and vindicate that right.

It is expected that the parliament will legalise abortion up to 12 weeks if the vote is successful.

Pro-choice advocates have gone on a media blitz, publishing blistering criticisms of the current abortion restrictions in the country.

“This referendum is an opportunity for all in Ireland to “trust women” and to ensure better, safer health care for both those who want to end their pregnancies and those who wish to keep them”, University of Keele law lecturer Sorcha Uí Chonnachtaigh wrote in The Conversation.

Pro-life campaigners are warning voters that changes to the abortion law will likely lead to abortion on demand.

“Any talk about time limits is meaningless”, said Aine Kierans, spokesperson for the Pro-Life Campaign. “Once the 8th Amendment is removed, it will inevitably lead to abortion on demand, because that's what we've seen in other jurisdictions”. 

Evidence of gross negligence is mounting against Belgium’s peak euthanasia regulatory body, the Federal Commission for Euthanasia Control and Evaluation.

Dr. Ludo Van Opdenbosch, a neurologist who was a Commission member for several years, resigned in September 2017. Associated Press recently obtained the letter of resignation that Dr Van Opdenbosch sent to senior politicians, which details his dissatisfaction with the oversight processes of the Commission. "I do not want to be part of a committee that deliberately violates the law," he wrote. 

According to the letter, the Commission failed to refer to authorities a doctor who Van Opdenbosch says euthanised a demented patient without consent. The letter outlines the basic details of the case – the patient, whose identity was not disclosed, was euthanised at the family's request, and there was no record of any prior request for euthanasia from the patient.

Furthermore, Van Opdenbosch states that when he expressed concerns about other potentially problematic cases, he was immediately "silenced" by other members of the Commission. He suggests that because many of the doctors on the commission are leading euthanasia practitioners, they can protect each other from scrutiny, and act with “impunity”. 

"It's not euthanasia because the patient didn't ask, so it's the voluntary taking of a life," said Dr An Haekens, psychiatric director at the Alexianen Psychiatric Hospital in Tienen, Belgium. "I don't know another word other than murder to describe this." 

However, the two co-chairs of the commission, Dr Wim Distelmans and Gilles Genicot, have strongly denied that there has been any negligence. "It can obviously occur that some debate emerges among members but our role is to make sure that the law is observed and certainly not to trespass it," they said. They also denied that Van Opdenbosch had been muzzled. 

Associated Press had already revealed details of a rift between the co-chair of the Commission, Dr. Willem Distelmans, and Lieve Thienpont, an advocate of euthanasia for the mentally ill. Distelmans suggested some of Thienpont's patients might have been killed without meeting all the legal requirements.

More than 360 doctors, academics and others have since signed a petition calling for tighter controls on euthanasia for psychiatric patients.

Ukraine's liberal laws attract people, BBC reporters suggest. The country recognises the "intending parents" as the biological parents from the moment of conception and places no limit on how much a surrogate may be paid - essentially creating an open market where women can demand their chosen price.

Yet the process doesn’t always run smoothly. There are unverified stories of embryos being secretly swapped, poor health screening and operators taking on too many clients to be able to offer the adequate level of care.

"We have seen examples where Ukrainian agencies have refused to pay the surrogate if she doesn't adhere to strict requirements, if she miscarries," says Sam Everingham, director of the Sydney-based charity Families Through Surrogacy.

The Hague Conference on Private International Law is currently drafting an international convention dealing with transnational surrogacy agreements and parentage. Lobbyists have urged that the convention condemn the practice of commercial surrogacy.

Former NFL players are turning to unapproved stem-cell treatments to deal with chronic pain and neurodegenerative disease.

News services in Texas recently reported that several former members of the Dallas Cowboys had received experimental stem-cell therapy in Mexico to deal with pain and injuries.

Bob Lilly, once a top defensive lineman for the Cowboys, said he had received two separate treatments offered by Texas stem cell company Celltex.

“I have no pain,” Lilly said. “And that's pretty unusual when you've played 24 years of football”.

Several of Celltex’s treatments are yet to be approved by the FDA, and in many cases the company flies clients to Mexico to receive stem cell injections.

Rickey Dixon, who played six seasons in the NFL (1988-1993) took out a loan to receive experimental stem-cell therapy after he was diagnosed with Lou Gehrig’s Disease in 2013. As a result of his neurodegenerative disorder, Dixon is now confined to a wheelchair and requires a feeding tube to eat.  

While many doctors are enthusiastic about the promise of stem cell therapies to treat brain damage, neurologist Michael De Georgia of Cleveland Medical Centre has sounded a note of caution:

“we need to be very cautious about claims and promises to patients who may be under the assumption or the belief that this therapy has been shown to be effective, and it hasn't”.

The Netherlands has joined Belgium and Spain in adopting “opt-out” organ donation legislation.  

Earlier this week the Dutch parliament narrowly passed a bill that requires every person over the age of 18 to notify government officials if they do not want to be an organ donor.

All adults in the country not yet registered as donors will receive a letter asking if they want to donate their organs after death. Those who do not respond to the first letter, or to a second letter six weeks later, will be considered organ donors, although they can amend their status at any time.

The law is intended to reduce pressure on next-of-kin, who are often required to make decisions about organ donation on behalf of the deceased.

Yet critics of the bill complained that it puts too much authority in the hands of the government over what happens to a citizen after their death.

Bioethicist Wesley J Smith suggested that in some cases euthanasia “without request or consent” could be combined with presumed consent for organ donation: “a patient could very conceivably be both killed and harvested without having requested it”.

The law is expected to be implemented in 2020.

The ACLU has launched a legal challenge against Ohio’s new down syndrome abortion legislation, which prohibits doctors from aborting pregnancies purely on the basis of a Down syndrome diagnosis.

The ACLU suit was filed on Thursday in a Federal court in Cincinnati on behalf of Preterm in Cleveland, Planned Parenthood and other Ohio abortion providers. "The government cannot deny a woman's right to terminate her pregnancy pre-viability," ACLU legal director Freda Levenson said at a news conference in Columbus announcing the suit.

Republican Ohio Governor John Kasich signed the law in December, and it is scheduled to take effect on March 23. The ACLU has requested both a temporary restraining order and a permanent injunction against the law to keep it from taking effect.

Ohio Right to Life, the state’s oldest pro-life organisation, has dismissed the lawsuit as a political stunt. “[The ACLU’s] blatant and continuous attacks on the dignity and sanctity of human life make it clear that they do not care for the youngest of each new generation: the unborn”, said Mike Gonidakis, the group’s president.

Similar laws have already made their passage through the legislatures of Indiana and North Dakota.

The Indiana law, enacted in 2016, has been blocked by a federal judge, who said the state has no right to limit women's reasons for terminating pregnancies. The state has appealed.

North Dakota's law went into effect in 2013 and has not been challenged.

According to the report in the Washington Post, “the Voluntary Health Association of India has estimated that about 2,000 Indians sell a kidney every year.”

In 2017, 10,078 people joined the Swiss euthanasia organisation Exit and the number of assisted suicides rose slightly. The organisation says that increased interest is due to the ageing population.

At the end of December 2017, the organisation had 110,391 members in German-speaking Switzerland and in Ticino, Only Swiss citizens are eligible for Exit’s services. Its rival, Dignitas, also accepts foreigners. Last year, 734 people ended their lives using Exit’s services, compared with 723 the previous year. Although men are generally much more likely to commit suicide, the majority of people using Exit are women (60%).

As in previous years, the most common underlying illnesses – according to Exit -- for which people sought its help were terminal cancer, age-related multiple illnesses and chronic pain. This is at odds with reports from Oregon and elsewhere that the most frequently reported end-of-life concerns are decreasing ability to participate in activities that made life enjoyable, loss of autonomy, and loss of dignity.

As a result she was eventually producing 227 grams of breast milk a day. This is below the 500 grams that babies need so she had to supplement it with formula. The authors of the study in the journal Transgender Health concluded that “modest but functional lactation can be induced in transgender women”.

“This is a very big deal,” says Joshua Safer of Boston Medical Center, told New Scientist. “Many transgender women are looking to have as many of the experiences of non-transgender women as they can, so I can see this will be extremely popular.”

While this development was greeted with great enthusiasm, further studies are needed to ensure that it is safe. Domperidone is associated with cardiac arrhythmias, cardiac arrest, and sudden death when used intravenously. There are reports that spironolactone is associated with tumours in rats. There may be other, long term effects, such influencing the child’s IQ.  

A Japanese man believed to have fathered at least 15 surrogate children has testified before a Thai court in a bid to retain his parental rights.

The man, 28 year old Mitsutoki Shigeta, has been caught in the centre of Thailand’s surrogacy crackdown, with the Thai Ministry of Social Development and Human Security taking his children into state custody. The Ministry wants to ensure the safety of the children.

Shigeta appeared before the court via video conference on Tuesday, and a decision is expected by February 20.

It is not clear how many babies Mr Shigeta has, with some reports saying dozens. Thai police have said DNA tests show 15 babies definitely are his.

Mr Shigeta’s lawyer said that his client wanted to have dozens of babies because he desired for a large family and hoped that they would inherit his fortune in the future. Unconfirmed reports suggest that Shigeta spent about US$500,000 on his surrogacy project.

Commercial surrogacy was allowed in Thailand until 2015, when a series of controversies – including Mr Shigeta’s recruitment of dozens of surrogate mothers – led the government to ban the practice.

Now only couples with at least one Thai partner can access the country's surrogacy services and, in the case of marriages between people of mixed nationalities, they must have been legally married for at least three years. The surrogate mother must be a Thai citizen over the age of 25 and she cannot receive any direct fees for being a surrogate.

A law that allows dying patients to refuse certain forms of life-sustaining treatment has come into effect in South Korea.

The law, which was passed by the National Assembly of Korea in January 2016, allows eligible patients to sign an advance directive indicating that do not wish to receive CPR, haemodialysis, artificial respiration and/or cancer treatment.

To be eligible, patients must be terminally ill with no chance of improvement and must be assessed by two doctors.

The law also allows anyone over the age of 19 to sign a letter of intent indicating they do not wish to receive life sustaining treatment if they become terminally ill in the future.

The law came into effect nationwide on February 4, after a pilot program was run for several months in 13 hospitals.

South Korea is a highly Confucian society, and patients and families have a tendency to continue with futile treatment at the end of life.   

Disability rights activists have criticised an assisted suicide bill currently being debated in Delaware, saying it fails to protect people with intellectual disabilities.

The bill, which was introduced into the Delaware General Assembly last month, would allow assisted suicide for terminally ill patients over the age of 18. Controversially, an amendment to the bill states that patients with an intellectual disability can receive assisted suicide provided they are deemed competent by a social worker.

Not Dead Yet President Diane Coleman described the proposed amendment as a “misdirect”:

The Delaware bill, and the Oregon law on which it is based, do nothing to prevent or discover coercion, nor even to define it. The attending physician need not know the person well...The witnesses to the lethal drug request form need not know the person at all, but can simply check their ID. Yet these are the people who “certify” that there is “no coercion.”

Bioethicist Wesley Smith was similarly critical:

These are people who can’t legally enter contracts!...They can’t make their own medical decisions!...Yet, if they have a terminal illness, they are going to be able to commit assisted suicide if a social worker–who may be ideologically predisposed in favor–confirms that they “understand” that they are receiving a poison prescription?

On January 19, the amendment to the bill was passed and was attached to the legislation. The legislation now awaits consideration in the House.

Dental students and a professor from the University of Connecticut have been chided for taken a “selfie” with two cadaver heads during a practical exercise in June.

AP reports that the students, who were at Yale University for a training workshop, took the selfie during a class with Professor Flavio Uribe, an assistant professor and orthodontics program director at UConn Health.

Professor Uribe appears in the photo with the students, though he has attempted to downplay his role in the incident. “Somebody unfortunately took a photo,” Uribe said. “It was so quick. I wasn’t sure of the surroundings or scenery at that point.”

Yale University medical staff have described the incident as an “egregious violation” of university policy. “The photograph taken at a symposium at Yale was disturbing and an inexcusable deviation from anything Yale would expect to occur,” University spokesman Thomas Conroy said in a statement.

The title of the Yale event was the DePuy Synthes Future Leaders Workshop, and it was intended to be a forum for top dental students to gather and learn from leading academics and clinicians.

A group of scientists based in Edinburgh and New York have grown several human oocytes to maturity in vitro, raising hopes of a solution for women at risk of premature fertility loss.

Writing in the journal Molecular Human Reproduction, the researcher team – led by Edinburgh University biologist Evelyn Telfer – describe a method for growing and maturing human oocytes (eggs) within primordial follicles (obtained from biopsies of ovaries) all the way through to oocytes that might be capable of being fertilised.

“The novel aspect of this current work is to have joined [several steps of development] into one continuous process”, said Professor Robin Lovell-Badge, Group Leader at The Francis Crick Institute, who was not involved in the study.

Essentially, the suggestion is that scientists may be able to grow eggs from ovarian tissue, all the way from early stages to later development stages, ready for fertilisation by sperm; and that this process could be achieved outside of the human body.

Experts say the research opens the door to a new approach to fertility preservation for women at risk of premature fertility loss – such as those undergoing chemotherapy or radiotherapy.

The paper comes in the wake of research into gestation bags for premature neonates, and a renewed interest in the development of embryos in vitro. 

A report in the New York Times revealed that ten monkeys had been exposed to exhaust fumes from a 1999 Ford diesel pickup and from a late-model Volkswagen. The 2014 study, conducted by the Lovelace Respiratory Research Institute, in Albuquerque, did not reach a conclusive finding. In any case, the results were completely unreliable. Volkswagen had provided the researchers with a car whose emissions controls had been manipulated so that it would generate far less pollution in a test than on the open road.   

The second experiment was conducted in Germany at a hospital in Aachen in 2013. A couple of dozen humans were exposed to varying concentrations of nitrogen dioxide under controlled conditions, and with the approval of an ethics committee. There were no negative effects upon the participants in the study.

When the news emerged, it created a sensation in Germany. The three car manufacturers distanced themselves from the studies.

"Volkswagen Group explicitly distances itself from all forms of animal cruelty. Animal testing contradicts our own ethical standards," VW said in a statement issued on Saturday. "We ask forgiveness for this bad behaviour and for the poor judgment of some individuals.” "The BMW Group in no way influenced the design or methodology of studies carried out on behalf of the EUGT," BMW said in a statement. "Daimler does not tolerate or support unethical treatment of animals," said Daimler.

German Environment Minister Barbara Hendricks was horrified: "What is known so far is disgusting ... The fact that an entire industry has apparently tried to conceal brazen and dubious methods of scientific research makes it even more monstrous."

While the monkey experiment seems to have been poorly designed and tainted by the lies of VW, the human experiment was a standard piece of industry-related research. As Canadian-German bioethicist Udo Schuklenk pointed out on his blog:

This study received the required ethics approval, the trial participants were healthy volunteers who gave first person informed consent to trial participation. It is unclear to me here why German politicians and board members of VW, BMW and Mercedes are falling over one another to condemn this research. It seems to me that no fraud was committed, and the question seems scientifically sound.

Similar research is conducted in other countries. Across the border in the Netherlands, the Dutch National Institute for Public Health (RIVM) "is involved in research in which volunteers ... are exposed to diluted emissions from a diesel engine" for a maximum of two hours, Flemming Cassee, a toxicologist at the organisation told AFP. "We've been doing it for years, and there is nothing extraordinary about it," he said, adding that the situation was the same in "many countries".

“People are going to look back and see this as a milestone in a new type of medicine that’s going to have broad implications for lots and lots of diseases,” one researcher told Science last year.

However, those hopes were chilled this week when a leading gene-therapy researcher who was involved in the successful trial also published a study in which high-dose AAV9 infusions severely affected animals. Three young rhesus macaque monkeys developed liver failure and three piglets had motor neurone damage. Some of them had to be euthanised. The cause was not immediately apparent.

One reason that the study has rung alarm bells is that it was conducted by James Wilson, of the University of Pennsylvania. In a gene-therapy experiment which he conducted in 1999, a teenager died of an immune reaction to a gene therapy vector, which gives his warnings a special relevance. “I think the message is that for certain forms of gene therapy, and certain approaches to gene therapy, there may be situations in which we find dose-limiting toxicity,” says Wilson. He has resigned from his position as a scientific advisor to Solid Biosciences, the company whose product cured the babies, citing unspecified concerns over high-dose gene therapy.

R. Jude Samulski, of the University of North Carolina, told MIT Technology Review that the combination of scientific ambition, technological advances, desperate patients, and potential financial windfalls could lead again to disaster.

“It would be very naïve for our community to assume we won’t have toxic effects,” he says. “People get comfortable, saying, ‘Hey, let’s do it—there is nothing lose.’ Well, it’s out there waiting. But when it’s going to happen, why it’s going to happen—nobody knows.”

An Ontario court has told a group of doctors that they must refer for Medical Aid in Dying (MAiD), affirming conscientious objection restrictions imposed by the province’s medical regulator.

Ontario’s Divisional Court ruled Wednesday that the referral requirement was a reasonable limit on doctors' freedom of religion because it protects vulnerable patients from harm.

Without the policy of "effective referral," equitable access would be "compromised or sacrificed, in a variety of circumstances, more often than not involving vulnerable members of our society at the time of requesting services," Justice Herman Wilton-Siegel wrote on behalf of a panel of three judges.

Five doctors and three professional organisations had appealed the conscientious objection restrictions outlined in the MAiD policy issued by the College of Physicians and Surgeons of Ontario, arguing that it infringed their right to freedom of religion and conscience recognised under the Charter of Rights and Freedoms.

The three organisations included the Christian Medical and Dental Society of Canada, the Canadian Federation of Catholic Physicians’ Societies and Canadian Physicians for Life.

Larry Worthen, executive director of the Christian Medical and Dental Society, said physicians who object to medically assisted death live in fear that they will be investigated and disciplined. “It puts them in an impossible situation”.

Yet the Court ruled that the freedom of the physicians was only “minimally impaired” by the effective referral requirement.

Shanaaz Gokool, chief executive of Dying With Dignity, applauded the court’s ruling.

“It’s a stunning decision that really puts the rights of the most vulnerable residents of this province ahead of the rights of clinicians” who object on religious grounds. “It’s a fair balance of rights.”

As of the 31st December, 1,030 patients had received an assisted death in the 18 months since the new law took effect.

*Thanks to Alex Shadenberg from the Euthanasia Prevention Coalition for making available the transcript of the Court ruling. 

A British High Court judge has told doctors that they can remove life support from an 11-month old baby boy, after a failed appeal by the boy’s parents.

Justice Alisdair MacDonald said Monday that it was not in Isaiah Haastrup’s best interests to continue treatment, ruling in favour of specialists from King’s College Hospital in London:

“Examining Isaiah’s best interests from a broad perspective ... I am satisfied that it is not in his best interests for life-sustaining medical treatment to be continued. That, with profound sadness, is my judgment.”

The case had been heard in the Family Division of the High Court in London.

Specialists at King’s College Hospital told the court that further intensive treatment would be “futile, burdensome and not in his best interests”. Haastrup had suffered “catastrophic” brain damage at birth as a result of oxygen deprivation, and had remained unresponsive since then, the doctors said.

Haastrup’s parents had claimed that the boy responded to his mother’s face and touch.

The case comes just months after a High Court decision to allow for the removal of life-support from Charlie Gard, an British infant suffering from mitochondrial DNA depletion syndrome. 

This question was raised by Iain Brassington of the University of Manchester, in response to the introduction of the Conscientious Objection (Medical Activities) Bill in the British parliament.

The bill would protect health care professionals who conscientiously object to a range of controversial medical procedures.

Brassington suggested that certain clauses of the proposed legislation may conflict with extant civil and criminal law, under which it is unlawful to fail to withdraw treatment (including life-sustaining treatment) from a competent patient who no longer consents to it, or from a patient who lacks capacity if treatment is no longer in her best interests.

Yet in a response post to Brassington, University of Strathclyde law lecturer Mary Neal said that there was no tension between the proposed bill and existing law.

First, Neal observed that existing GMC guidance permits a conscientious objection to withdrawal of life-sustaining treatment. Paragraph 79 of the GMC’s guidance Treatment and care towards the end of life: good practice in decision making (2014) states that doctors can object to withdrawing treatment if their “religious, moral or other personal beliefs” lead them to do so.

“Doctors, at least, are already subject to guidance that tells them they can opt out of involvement in the withdrawal of life-sustaining treatment”, Neal writes.

Second, Neal observes that extant case law requiring the withdrawal of treatment of consenting patients applies to Trusts rather than to individual doctors:

When a competent patient indicates that she no longer consents to life-sustaining treatment [...]continued treatment is unlawful...But this obligation belongs to the Trust...If an individual professional notifies her employer that she has a belief that forbids her from performing the act of withdrawal (switching off a life support machine, or disconnecting a feeding tube, for example), it is incumbent upon those with management responsibility to assign the task to someone else who has no such objection.

The Conscientious Objection (Medical Activities) Bill has progressed passed a second reading in the House of Lords, and will now go before a committee. 

Baroness Jowell, who is suffering from a malignant brain tumour known as glioblastoma, argues that the approval process for cancer treatments needs to be quicker, and advocates the use of what are called “adaptive clinical trials” to test cancer drugs.

Current UK trial methods require that each new drug have an individual trial path, involving several phases that can be extremely costly and take several years.

Adaptive trials are designed to improve the speed and efficiency of drug development. They do this by taking a more flexible approach, allowing multiple drugs to be tested within the same trial. As a result, drugs that hold promise can be rapidly identified and tested, while other less effective drugs can be discarded.

“So many cancer patients collaborate and support each other every day...All we now ask is that doctors and health systems learn to do the same”, Jowell said to the Parliament.

Some scientists are supportive of Jowell’s proposal.

Writing in The Conversation, neuropathologist Silvia Marino and oncologist Peter Hall of Queen Mary University described the use of adaptive trials as a “more flexible approach for a new era”: “For patients with rapidly progressing, life-threatening conditions, such as glioblastoma, [adaptive trials] can make the difference between having access to a new drug or not”.

But many are sceptical of the proposal.

In a 2015 paper, Indiana University clinician Scott Saxman warned of significant ethical concerns that arise from such studies. According to Saxman, these concerns include “loss of equipoise, lack of processes for adequate informed consent, and inequalities inherent in the research design which could lead to perceptions of injustice that may have negative implications for patients and the research enterprise”. 

The results were published in the journal Cell.

The first successful SCNT monkey clones immediately sparked interest in in the dream of human cloning. Dr Poo told The Guardian:

“There is now no barrier for cloning primate species, thus cloning humans is closer to reality. However, our research purpose is entirely for producing non-human primate models for human diseases; we absolutely have no intention, and society will not permit, this work to be extended to humans.”

The process is quite inefficient at the moment. In the Chinese experiment, 79 embryos were created and implanted into 21 surrogates. Only two live births resulted.

“The work in this paper is not a stepping stone to establishing methods for obtaining live born human clones,” commented Professor Robin Lovell-Badge, of the Francis Crick Institute, in London. “This is so inefficient, so hazardous and unsafe, that I am not sure it is really justified, to be honest.” 

A Roman Catholic deacon and nurse may be Belgium’s worst serial killer. Taking advantage of his work in a nursing home, Ivo Poppe, 61, may have killed up to 50 people by injecting air into their veins. The deaths took place between 1978 and 2011.

His last victim was his own mother, who was suffering from depression, but he also dispatched his stepfather and two uncles. He normally gave his victims an injection of Valium with a bubble of air, which caused an embolism.

Poppe’s trial began this week in the city of Bruges. He has been formally accused of at least ten deaths, but police believe that there are many more. Poppe has made several partial confessions, admitting to different numbers of victims, ranging from 10 to 100.

He was arrested in 2014 after he consulted a psychiatrist about nightmares and confided that he had “euthanised dozens of people”. He told the court, “I wanted to end their suffering, these people weren’t really living anymore.”

Poppe also admitted that none of his patients had requested him to shorten their lives. He also expressed regret over his actions. “Now, I would seek assistance from a palliative care team,” he added.

Poppe, a married father of three, was ordained as a deacon in 1996 and was employed as a pastoral worker until 2011.

The Belgian trial coincides with further charges against a German nurse, Niels Högel, who has already been convicted of killing six patients in the northern German city of Oldenburg. He is now being charged with 97 further counts of murder. 

Like some Western countries, Japan has a dark eugenic past.

A 1948 Eugenic Protection Law (EPL) was intended to prevent the births of “inferior descendants” and to foster the health of mothers and pregnant women. It provided for both voluntary and involuntary sterilisation. Doctors could apply for permission for sterilisation to a regional board if a patient suffered from a range of conditions which were believe to be hereditary, including schizophrenia, manic-depressive psychosis, epilepsy, abnormal sexual desire, "remarkable criminal inclination," Huntington's disease, muscular dystrophy, albinism, achromatopsia, deafness, haemophilia, and so on.

The Ministry of Health issued guidelines in 1953 clarifying what doctors could do: "It is permissible to restrain the patient's body, to administer an anesthetic, or to deceive the patient, etc."

According to government statistics, between 1949 to 1994, 16,520 involuntary sterilizations were performed, 11,356 on women, and 5,164 on men. Most were performed on inmates of psychiatric hospitals and institutions for intellectually disabled people.

Compulsory sterilisation lapsed in 1996 with the passage of the Mother's Body Protection Law. However, the Japanese government has refused to apologize to the victims of the law or offer them compensation.  

from 'Reflections of the Past', a photo series by Tom Hussey 

Canada’s new euthanasia legislation does not permit binding advance directives. However, there is pressure to incorporate them into legislation. Supporters argue that some people choose euthanasia too soon because they fear lingering on in a demented state.

In an acute analysis of the situation in the blog Impact Ethics, Valentina Romano points out that the “legalizing dementia-related advance directives ... is problematic because the justification rests on the assumption that dementia patients are simpler, faded versions of the healthy persons they once were. In reality dementia patients are not abridged versions of their past selves; they are different persons facing new challenges with a different set of interests.”

It is impossible to predict what the wishes of a person with dementia will be, as the disease is “enigmatic and unpredictable”. Romano argues that dementia patients slowly become two different persons as their disease progresses. Therefore “a prospective end-of-life decision made through an advance directive affords too much power to the present person and none at all to the future one.” She concludes:

For a person facing dementia to make a life-ending decision for a future self is more equivalent to that patient making such a decision for a complete stranger. This is, in my mind, the most problematic aspect of advance directives for dementia-related MAiD. By the time they are effective, advance directives for MAiD are to implement wishes that may be utterly irrelevant and completely forgotten by the late-stage demented patient.

A Northern Ireland peer has introduced a bill into the House of Lords to guarantee the controversial right to conscientious objection. Baroness Nuala O’Loan says that her Conscientious Objection (Medical Activities) Bill is needed to protect medical professionals:

Reasonable accommodation of conscientious objection is a matter both of liberty and equality: of individual freedom and social inclusion. No one should be coerced by the risk to their careers into violating their conscience, and it is plainly inconsistent with the principles of equality legislation to exclude whole sections of society from areas of medical employment simply because of their moral beliefs. I hope this excites support from across the country that allows us to fix this deficit of legal rights and protections".

According to the Free Conscience Campaign, a recently launched lobby group, existing law is inadequate for protecting the conscientious rights of medical professionals. A parliamentary inquiry in 2016 found that some doctors and nurses face difficulties due to their conscientious objection to practices that they believe end a human life, such as withdrawing food and fluid from a dying patient in end of life care.

The conscience rights of midwives were also undermined by a 2014 Supreme Court judgment, which held that the conscience provision in the Abortion Act 1967 did not cover aspects of their employment.

The bill is sure to create debate as it gains momentum in Parliament. When it was first proposed in 2015, the chair of the Secular Medical Forum, Dr Anthony Lempert, commented:

"The risk is that granting doctors and nurses wider freedoms to withdraw from providing care risks compromising the provision of care; this is something we have seen in other countries such as Italy where some patients have been unable to access abortion services."

Nobel Prize winner Shinya Yamanaka has been dragged into a case of stem cell research fraud in his laboratory. This week Kyoto University found that the lead author of a 2017 paper in Stem Cell Reports, Kohei Yamamizu, had fabricated all six main images, which were “pivotal in the conclusions the author drew”.

Yamamizu is an assistant professor in a research group led by Yamanaka at Kyoto University’s Center for iPS Cell Research and Application. There is no suggestion that Yamanaka was involved, but apparently he has even considered resigning from his position.

“[The fraud] is something that shakes the people’s trust in research activities and is extremely regrettable,” Japanese education minister Yoshimasa Hayashi told the media. “We would like to instruct Kyoto University to do its utmost to prevent a recurrence.”

It is unlikely that Yamanaka will be forced out. “Resignation doesn’t sound like the right thing to happen in this situation,” commented Alan Trounson, a leading stem cell scientist at the Hudson Institute of Medical Research in Melbourne.

The field of stem cell research has been marred by a series of spectacular examples of fabrication and falsification, from Korean researcher Hwang Woo-suk in 2004 to Japanese scientist Haruko Obokata in 2014. 

A British surgeon who branded the livers of two of his patients with his own initials has been fined £10,000 and ordered to perform 120 hours of community service. Dr Simon Bramhall, a liver, spleen and pancreas surgeon, admitted the two incidents, which occurred in 2013. His registration has not been suspended. He now works for the National Health Service in Herefordshire. 

Although he seared his initials into the surface of the liver, no physical harm was suffered by the patients. In sentencing the surgeon, the judge said:

“Both of the operations were long and difficult. I accept that on both occasions you were tired and stressed and I accept that this may have affected your judgment. This was conduct born of professional arrogance of such magnitude that it strayed into criminal behaviour.

“What you did was an abuse of power and a betrayal of trust that these patients had invested in you. I accept that you didn’t intend or foresee anything but the most trivial of harm would be caused.”

Syrian medical facilities have experienced a dramatic increase in attacks, particularly in opposition-controlled areas of Hama and Idlib, according to Physicians for Human Rights (PHR).

PHR has received reports of 16 attacks between December 26 and January 8, concentrated in southern Idlib and northern Hama, eight of which PHR has independently verified. Medical workers have confirmed with PHR that most, if not all, facilities in the areas affected by the recent bombing campaign have been forced to close down or are operating at a very limited capacity.

“We haven’t seen this many facilities targeted in such a short period of time since last May, when the area was ostensibly put under protection,” said Marianne Mollmann, director of PHR’s research and investigations team. “These illegal attacks are basically herding civilians from one area to another with bombs.”

One of the facilities hit by the recent airstrikes was Idlib’s al-Salam Maternity Hospital, in an incident on January 3 which killed several civilians, including a newborn. According to field sources contacted by PHR, the hospital was targeted more than once, with two airstrikes landing meters away and putting the hospital out of service indefinitely. This hospital was one of only two hospitals in the area providing paediatric and gynaecological medical services.

 “It is really frustrating that never before in the history of conflicts have health facilities been destroyed in this savage way – and yet the world is silent,” a Idlib Health Directorate representative said. “People are killed twice – once when they are targeted and once when they are deprived of their right to get health care and medical services.”

The Hasan al-Araj Hospital in Hama was impacted by at least three separate airstrikes during one week between December 28 and January 5. The assault blocked one of the entrances, forcing the facility to suspend operations. This hospital was built into a cave to provide some measure of protection, but it has not escaped being the target of airstrikes. In October 2016, PHR documented a wave of attacks on Hasan al-Araj Hospital, which forced the temporary evacuation of staff and patients.

“At this stage of the Syrian conflict, even fortified hospitals are not secure,” said Dr Homer Venters, PHR’s director of programs. “If ever there was an indication that this is a deliberate attack on health care workers who risk their lives to provide care, this is it. It is incomprehensible that the international community is allowing these unthinkable war crimes to continue unabated.”

The beginning of January also saw several reported attacks on medical facilities in eastern Ghouta, as well as suspected chemical attacks affecting civilian populations there. In addition, on January 19, a psychiatric hospital was reportedly struck in Afrin in northern Aleppo.

Singapore has no law on surrogacy, but has forbidden commercial interest in adoption. On December 27, Judge Shobha Nair ruled that the two men could not adopt the child, leaving him in a legal limbo. In a stinging ruling, she declared that paying the surrogate mother “reflects the very thing the Adoption Act seeks to prevent — the use of money to encourage the movement of life from one hand to another”.

Singapore encourages parenthood within marriage. “Planned and deliberate parenthood by singles, as evidenced through the intentional use of assisted reproduction and/or surrogacy runs contrary to this,” said a spokesperson for the Ministry of Social and Family Development. “The Adoption of Children Act prohibits any payment or reward to the biological or adoptive parents for the adoption of the child, except with the sanction of the Court.”

Without an adoption order, the couple’s child remains an American citizen and a foreigner whose residence permit must be renewed every six months. Furthermore, he is regarded as “illegitimate” by the government, which means that the parents will not receive the government baby bonus and that he cannot automatically inherit the couple’s estate should they die. Because he is a foreigner, schooling will be difficult.

But the judge showed no sympathy for the couple’s quandary. This is a problem of their own making, she declared.

“The applicant and his partner knew that the laws of Singapore allow the use of assisted reproductive technologies by married couples only. There are no services which promote surrogacy in Singapore. This application is in reality an attempt to obtain a desired result — that is, formalising the parent-child relationship in order to obtain certain benefits, by walking through the back door of the system when the front door was firmly shut.”

“The child will continue to be given a roof over his head, food on his table, a good education and a support system — with or without an adoption order.”

Judge Nair insisted that the fact that the couple’s is gay had no bearing on the case, but The Economist was less sure. “A bizarre court case exposes the city-state’s Victorian attitudes to families,” was its summary of the case. “The real problem seems to be the men’s sexuality.”

Under President Emanuel Macron, the government has promised to update France’s laws on assisted reproduction, which currently limit the practice to heterosexual couples. According to France 24, “The restrictive legislation means single women and lesbian couples with sufficient funds often travel abroad for artificial insemination, while those without the financial means cannot – a situation France’s new gender minister, Marlene Schiappa, says is unjust.”

The government has set up a website for the “Etats généraux de la bioéthique” – the Estates General of bioethics, a reference to the 1789 assembly from which the French Revolution emerged. This is supposed to inform the public and gather reactions.

President Macron addressed religious leaders earlier in January and invited them to participate fully in the debate. He said that he wanted to ensure that France had a serious discussion about reforms and that the law responded responsibly to changes in technology and society. He could face polite but trenchant criticism from the new Catholic Archbishop of Paris, Michel Aupetit, who practiced as a physician for more than 20 years and has taught medical ethics. 

A medical ethicist has resigned from a Dutch regional assessment committee for euthanasia over a law which allows non-consenting demented patients to be euthanised. For ten years Berna van Baarsen helped to assess whether euthanasia had been performed in accordance with the law in the North Holland region. She resigned on January 1. “'I do not believe that a written declaration of intent can replace an oral request for incapacitated patients with advanced dementia,” she told the magazine Medisch Contact.

Under Article 2.2 of the Dutch euthanasia law, a doctor may euthanize a patient who can no longer make clear what he wants, but who had previously left a written declaration. The law says:

If a patient aged sixteen or over who is no longer capable of expressing his will, but before reaching this state was deemed capable of making a reasonable appraisal of his own interests, has made a written declaration requesting that his life be terminated, the physician may comply with this request unless he has well-founded reasons for declining to do so. 


"In people with a terminal illness like cancer, in whom euthanasia has already been agreed but who suddenly ended up in a coma because of their illness, that's fair," says van Baarsen.

However, dementia is a very different kind of ailment, she told Trouw. "That disease is more erratic and patients often live longer. A lot of things can happen during that period. "For instance, a patient might say that she would want euthanasia if she no longer recognizes his relatives. "This could happen. But at a next visit she can still recognize her partner or her children. What is the right moment to grant euthanasia? "

Furthermore, the suffering of a dementia patient is difficult to assess.

"It is fundamentally impossible at this stage to establish that the patient is suffering unbearably, because he can no longer explain it", says van Baarsen. 

Sometimes patients act aggressively after being admitted to a nursing home, even shouting that they want to leave. "It is of course possible that the patient is suffering unbearably,” she admits. “But does the same applies to a nursing home resident who is sitting quietly in a corner? If you are not entirely sure, you cannot presume that they are suffering unbearably.”

Van Baarsen is not the only member of a euthanasia review committee to resign over the interpretation of the law. Three years ago ethicist Theo Boer also stepped down and has become a harsh critic of the Dutch euthanasia system. 

If anyone were in doubt about where Donald Trump stood on abortion, his speech to the annual March for Life in Washington DC on Friday will settle the matter. Speaking by video hook-up to a crowd of tens of thousands, the President said "under my administration, we will always defend the very first right in the Declaration of Independence and that is the right to life".

“Today, we focus our attention on the love and protection each person, born and unborn, deserves regardless of disability, gender, appearance, or ethnicity,” President Trump said. He also proclaimed January 22, as National Sanctity of Human Life Day.

Mr Trump’s position on abortion has evolved over the years. In a 1991 interview with NBC News, he declared, "I'm very pro-choice". But, he added, perhaps foreshadowing his volte face on the topic, "I hate the concept of abortion, I hate it, I hate everything it stands for. I cringe when I listen to people debating the subject. But I still just believe in choice."

The Conscience and Religious Freedom Division of the HHS’s Office for Civil Rights will handle complaints related to participation in controversial medical practices such as abortion, euthanasia and assisted suicide, and gender reassignment. Federal officials said the division will allow HHS to "more vigorously and effectively" enforce laws related to conscience and religious freedom.

"Laws protecting religious freedom and conscience rights are just empty words on paper if they aren't enforced”, said Roger Severino, director of the Office for Civil Rights. “No one should be forced to choose between helping sick people and living by one's deepest moral or religious convictions, and the new division will help guarantee that victims of unlawful discrimination find justice”.

Individual health care professionals will have the option of lodging a formal complaint with the Civil Rights Office, which can in turn “initiate compliance reviews, conduct investigations...and use enforcement tools otherwise available in civil rights law to address violations and resolve complaints”.

The announcement was made just a day before the March for Life, an annual pro-life march in Washington DC. The president was a keynote speaker at the event.

In addition, the HHS’ Centers for Medicare & Medicaid Services (CMS) is issuing new guidance to state Medicaid directors restoring state flexibility to decide program standards. A letter sent on Friday rescinded 2016 guidance that specifically restricted states’ ability to take certain actions against family-planning providers that offer abortion services.

The announcement was met with mixed reactions. Family Research Council President Tony Perkins praised the new measures, calling it "another moment in which President Trump's promises are becoming a reality."

Louise Melling, deputy legal director of the ACLU, was critical.  

"The administration is doubling down on licensing discrimination against women and LGBT people, all in the name of religion”.  

Has science been a boon to the pro-life movement? Yes, says journalist Emma Green. In an feature article published in The Atlantic this week, Green suggests that, while both pro-choice and pro-life groups have used developments in embryology and neonatology to their advantage, the pro-life movement has been particularly effective in using new scientific evidence to shape the legislative agenda. After cataloguing developments in ultrasound technology and life-saving care for premature babies, Green states:

These advances fundamentally shift the moral intuition around abortion. New technology makes it easier to apprehend the humanity of a growing child and imagine a fetus as a creature with moral status.

Pro-life advocates have used fetal research to underpin abortion reform:

Advocates have introduced research on the question of fetal pain and whether abortion harms women’s health to great effect in courtrooms and legislative chambers, even when they cite studies selectively and their findings are fiercely contested by other members of the academy.

Green interviews several experts on both sides of the debate; she considers whether the use of science has obscures the moral dimension of the debate. Daniel Sulmasy of Georgetown University states that “The question of whether the embryo or fetus is a person … is not answerable by science,” and that “We’ve become steeped in a culture in which only the data matter, and that makes us, in some ways, philosophically illiterate”. 

Fertility treatment in Ireland has been poorly regulated for several years. 

Yet the Irish government will soon introduce detailed legislation to guide the use of assisted reproductive technologies. Fertility treatment reforms are currently being developed in parliament.

Late last year the Department of Health released details of a general scheme to regulate fertility treatment. The government approved the department’s request to draft new legislation, and a parliamentary committee is set to make a series of proposals to Cabinet in coming months.

Department of Health chief medical officer Dr Tony Holohan said the new regulatory scheme will allow preimplantation sex-selection under certain circumstances, while prohibiting commercial surrogacy. A new Assisted Human Reproduction Regulatory Authority will be established to gather data on fertility treatment around the country and enforce statutory regulations on ART.

Fertility treatments will be permitted for women up to the age of 47, while for men there will be no age limit. 

How utilitarian are you? Leading bioethicists at Oxford University, including Julian Savulescu, have published a nine-question survey which allows you to identify whether “You’re not very utilitarian at all.” or whether “You might be Peter Singer”. )Click here to take the survey at the Practical Ethics blog.)

The team at Oxford’s Uehiro Centre developed the survey, which is called “the Oxford Utilitarianism Scale”, in part, to help restore the badly dinted image of utilitarian thinking amongst ordinary people (although the proportion of those who have opinions on utilitarianism tout court is likely to be very small).

The philosophy of Jeremy Bentham and John Stuart Mill has come in for a battering in recent years. It is associated with university assignment about “trolley problems” which involve killing people tied to railway tracks, with psychopaths and Macchiavellian thinking. The Oxford team admits in an article published in the journal Psychological Review that:

Utilitarianism tells us to impartially maximize the aggregate well-being of everyone—and that we must severely harm or even kill innocent people if doing so is needed to achieve this overarching moral ideal.

This seems rather harsh, not to say inhuman, to the protesters at some of Peter Singer’s public lectures. As Savulescu reports, John Paul II’s devastating put-down was: “Utilitarianism is a civilization of production and of use, a civilization of ‘things’ and not of ‘persons,’ a civilization in which persons are used in the same way as things are used.”

 However, in recent years, Singer has been promoting another face to utilitarianism: “impartial beneficence”, which leads to “effective altruism”.

In a blog post on Practical Ethics, Savulescu draws upon the traditional language of Christian morality to describe the positive altruistic core at the heart of his philosophy:

There are two other features of utilitarianism that are often neglected. First, it compels us to do as much good as we can in the world—a much more positively oriented aim—while treating each of us in exactly the same way. So when I ask, “What is the right thing for me to do?”, my own wellbeing counts no more (or less) than anyone else’s. So, if I could give a kidney and save someone else’s life without putting my own life at equal or greater risk, I should give a kidney. This is very demanding. And if I do it, admirable—maybe saintly.