April
18
 

Even for Ebola, unproven treatments are dicey, say bioethicists

In a target article in the latest edition of the American Journal of Bioethics, three bioethicists from the National Institutes of Health question the ethics of providing unproven interventions to Ebola victims and those at risk. 

Seema K. Shah, David Wendler and Marion Danis describe the detrimental effects of providing an unproven treatment – in particular (where the treatment fails to work) decreased trust in doctors and the medical profession generally.

The ethicists conclude that it may be more beneficial to focus on other methods of stemming the spread of the disease, such as building up healthcare infrastructure and providing healthcare workers to affected areas, rather than focusing energies on distributing what are potentially unbeneficial, or worse, harmful drugs.

Concerning patient trust in medical professionals, the authors observe: 

“The practice of medicine was once coloured by the public’s perception of physicians as peddling goods that were unlikely to cure them…it would be problematic and could undermine trust in the medical profession if physicians were to routinely offer unproven remedies without much reason to support their use…” 

They also consider the patent truth that there are often serious limitations placed on healthcare resources.

“In weighing their competing priorities, funders seeking to do the most good as efficiently as possible may reasonably choose to prioritize building public health and health care infrastructure…health systems on West Africa have been severely strained by the crisis, and both health systems and regulators…may have many priorities ahead of providing access to experimental therapies”.

“[Healthcare policy makers] should prioritize the provision of and further research into supportive care interventions that are effective against Ebola virus disease”, the authors conclude.   



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April
18
 

Feverish vaccine debate spreads to Australia

Last Sunday the Australian government announced a controversial new immunisation policy that makes welfare support for families conditional on child immunisation.  

“The no jab, no pay” welfare plan, which has by partisan support in the Australian federal parliament, will require of parents that they immunise their children against serious infectious diseases such as measles, mumps, rubella, tetanus and polio.

Parents who refuse to immunise their children could lose up to A$2100 per child per year in welfare payments.

Social services minister Scott Morrison, who announced the plan, said that the medical community was united in its support for universal vaccination, and that “objections” were no long acceptable.

“The overwhelming advice of those in the health profession is it’s the smart thing and the right thing to do to immunise your children.”

Federal opposition leader Bill Shorten agreed:

“We believe fundamentally in the science of vaccinations and we fundamentally believe that policy should be made by the best evidence and the best science”.

The announcement has met fierce criticism from many members of the public.

An online petition against compulsory vaccinations in Australia that states “all parents deserve to make an uncoerced choice” has received more than 3000 signatures in five days.

Bond University associate professor Stephen S Holden called the government’s new policy “ethically precarious”:

“Here’s what lies at the heart of the problem: the risk of adverse reactions from vaccines is actually very small but families unfortunate enough to suffer a vaccination reaction are unlikely to be consoled by this improbability. They may be little moved by the fact that their loss nonetheless served the common good.”

Experts estimate that 39,000 Australian children under seven have not received immunisation because their parents are vaccine objectors.



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April
18
 

Unreported clinical trial data “unethical”

The World Health Organization (WHO) has called for the disclosure of results from clinical trials for medical products, whatever the result. The move aims to ensure that decisions related to the safety and efficacy of vaccines, drugs and medical devices for use by populations are supported by the best available evidence.

“Our intention is to promote the sharing of scientific knowledge in order to advance public health,” said WHO official Marie-Paule Kieny. “It underpins the principal goal of medical research: to serve the betterment of humanity.”

According to WHO, there is increasing empirical evidence to suggest that the results of many clinical trials are suppressed from the public. One study that analysed the reporting from large clinical trials (more than 500 participants) registered on ClinicalTrials.gov and completed by 2009 found that 23% had not reported any results. These unreported trials included nearly 300,000 participants.

Even where results are released, the process of publication can be very protracted. Among clinical trials of vaccines against five diseases registered in a variety of databases between 2006-2012, only 29% had been published in a peer-reviewed journal by the WHO-recommended deadline of 24 months following study completion.

WHO has recommended that from now on the main findings of every clinical study should be submitted to a peer-reviewed journal within 12 months after data collection ends and be published -- in an open-access journal unless there is a specific reason why that's impossible -- within 24 months.

"It's unethical to conduct clinical research without reporting the results," says immunologist Dr. Vasee Moorthy, author of a paper discussing the rationale behind the WHO’s new statement. Europe and the United States have already made important regulatory strides to registering trials and making their outcomes public, Moorthy says. 



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April
18
 

Bad ideas never die; they just plea bargain

A series of cases in Tennessee suggests that women may be trading sterilization for reduced jail sentences in the US. According to a report by AP, Nashville prosecutors have done deals with women at least four times in the past five years.

In the latest case, a 36-year-old woman with a long history of mental illness, Jasmine Randers was charged with neglect after her 5-day-old baby mysteriously died during the night. Her lawyer alleges that the prosecution refused to discuss a plea bargain unless she agreed to be sterilized.

In conjunction with similar incidents in Virginia, West Virginia and California, lawyers think that many sterilizations may be organised out of view by the public and the courts. "It's always been more of 'If your client is willing to do this, then I might be inclined to talk about probation,'" one lawyer commented.

"The history of sterilization in this country is that it is applied to the most despised people — criminals and the people we're most afraid of, the mentally ill — and the one thing that that these two groups usually share is that they are the most poor. That is what we've done in the past, and that's a good reason not to do it now," says Paul Lombardo, of Georgia State University, an historian of eugenics.

The current district attorney for Nashville has the use of sterilization as a condition for a plea bargain.

 “Any time a woman is given a choice between prison and this surgery, that is inherently coercive, even in cases where there is no mental illness,” Ms Randers’ attorney says.



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April
18
 

Gene of the Week 2: voting preferences

According to researchers at TwinsUK, a registry of identical and non-idential twins, genes are the best predictor of how people will vote. “Our choices at the polling booth may not be as free or rational as we would like to believe,” they conclude in The Conversation.

“We found that voting Conservative (or not) is strongly influenced by genetics. When it came to voting Tory, we found that 57% of the variability (differences or similarity) between people’s voting preferences were due to genetic effects,” writes Professor Tim Spector, of Kings College London.  The percentages for UKIP were 51% and for both Labor and the Green Party 48%.

Only a vote for the Liberal Democrats could not be explained by genetics.

“Previous studies have also shown strong genetic influences on right-wing views – be they for or against. We and others have demonstrated consistent genetic influences on all measurable aspects of our personalities. The consensus is that these political leanings are mainly due to the genetic makeup of our underlying personalities.”



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April
18
 

Gene of the Week 1: sex offending

The father of modern criminology, the Italian sociologist Cesare Lombroso (1835-1909) believed that criminality was genetically determined. A “born criminal” could be detected by the presence of a long list of “stigmata” such as an asymmetrical faces, sloping forehead, large ears or left-handedness. This idea has been largely discredited, but, it flowers as soon as water floods the desert sands.

Newspapers last week featured headlines like: “Sex crimes may run in a family's male genes” or “Genetic factors were found to increase the risk of a sex crime conviction” or “Sex offending is written in DNA of some men” after the release of a Swedish study of the genetic link to sex crimes.

Researchers at the Karolinska Institutet in collaboration with Oxford reported in the International Journal of Epidemiology that close relatives of men convicted of sexual offences commit similar offences themselves more frequently than comparison subjects. This was due to genetic factors rather than shared family environment. They found that about 2.5% of brothers or sons of convicted sex crime offenders are themselves convicted for sex crimes. The equivalent figure for men in the general population is about 0.5%. 

As the Daily Mail helpfully pointed out, the late Jimmy Savile, the notorious British entertainer who allegedly abused hundreds of people, many of them children, had a brother (now deceased) who is also suspected of having committed several sex offenses.

"Importantly, this does not imply that sons or brothers of sex offenders inevitably become offenders too", says Professor Niklas Langstrom, the study's lead author. "But although sex crime convictions are relatively few overall, our study shows that the family risk increase is substantial. Preventive treatment for families at risk could possibly reduce the number of future victims."

What does he mean by “preventative treatment”? First of all, the fathers and brothers of sex offenders could be offered psychological counselling to foster awareness of sexual boundaries and help in conflict management. Second, “psychological and pharmacological help to decrease individual risk factors such as cognitive distortions, emotional instability and hypersexuality”.

A journalist with the journal Science, Emily Underwood, suggested that the results should be taken “with a generous dash of salt” because of limitations with the data. “We’re a long way from pinning down genes that can explain why a person commits rape or any other sex crime.”

Nathaniel Comfort, an historian of genetics at Johns Hopkins University was less restrained. “Can you believe this? A family correlation taken as a genetic link–for a predisposition to crime. This is so simplistic it’s like 1910 all over again. It’s not back to the future–it’s ahead to the past.”



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April
18
 

Should medicine leave the gold standard of randomized trials?

When you google “randomized controlled trials”, you find an abundance of news stories and government agency websites which describe them as the “gold standard” of medical research. Take, for instance, a recent press release from Johns Hopkins University: “They found that only 11 of the programs met the scientific ‘gold standard’ for reliability in the studies—using randomized clinical trials.”

However, the medical profession is far less confident. Adding to the chorus of researchers and clinicians is an article in The Lancet which calls for a more “ecumenical” and flexible approach to acceptable study designs.

David S Jones and Scott H Podolsky, both from Harvard Medical School, point out that randomized trials do not have a long history. The first one took place in 1948 and the first instance of describing them as the “gold standard” dates back to only 1982.

While RCTs are clearly useful, they argue that “ever-growing databases provided by electronic medical records” and personalised medicine may be eroding their status.

They describe a rigid insistence on RCTs as “medical monotheism”.  

“… the emergence of biomedicine within the monotheistic traditions of Europe and the Middle East imbued medicine with a commitment to universal truths, unitary paradigms, and a ‘single-minded approach to illness and care’. The idea of a gold standard, that there is one best way to do something, whether conduct clinical research, diagnose a disease, or treat a patient, emerges from this underlying commitment.”

But in a world where universal truths are fading and governments have abandoned the yoke of a financial gold standards, perhaps RCTs need to be dethroned as well. 



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April
18
 

Canadian bioethicist attacks conscientious objection

The Canadian Medical Association is digging in its heels to protect doctors’ right of conscientious objection to euthanasia and assisted suicide, which will soon become legal. In an interview with the National Post, CMA president Chris Simpson  said recently, “we simply cannot accept a system that compels physicians to go against their conscience as individuals on something so profound as this.”

Don’t listen to him, warns one of Canada’s most prominent bioethicists. No doctor should have the right to conscientious objection, he says.

Professor Udo Schuklenk, of Queens University and editor-in-chief of the journal Bioethics, delivered a blistering attack on conscientious objection in medical practice in his blog:

The very idea that we ought to countenance conscientious objection in any profession is objectionable. Nobody forces anyone to become a professional. It is a voluntary choice. A conscientious objector in medicine is not dissimilar to a taxi driver who joins a taxi company that runs a fleet of mostly combustion engine cars and who objects on grounds of conscience to drive those cars due to environmental concerns.

Professor Schuklenk puts forward two reasons. First, medicine is a service industry and “Patients are entitled to receive uniform service delivery from health care professionals. They ought not to be subjected to today’s conscientious objection lottery.” This is a particular concern in a country as vast as Canada, where doctors may be scarce in rural areas.

Second, he regards and appeal to conscientious objection as a fig leaf to give privileged protection to practicing Christians. “Conscience clauses today are by and large a concession of special rights to Christian health care professionals, at least in secular Western democracies.”



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April
12
 

Was the Boston bomber too young to be responsible?

As the trial for the Boston Bomber Dzhokhar Tsarnaev draws to a close, experts are debating whether the accused’s age diminishes his culpability. Together with his brother, 19-year-old Tsarnaev planned and executed the devastating Boston Bombings on April 15, 2013, which killed three civilians and injured 264 others. In a subsequent manhunt the Tsarnaev brothers killed a police officer and wounded 15 others.

Like Dzokhar’s defence lawyers, Temple University psychology professor Laurence Steinberg acknowledges that adolescence does not entail innocence. He does, however, believe it might diminish the defendant’s guilt:

“The issue is not whether adolescent immaturity excuses criminal conduct — it doesn’t — but whether it diminishes someone’s responsibility for his actions, in much the same way that coercion or unusually strong emotions might…

“Research… has identified the neural bases of adolescents’ intensified susceptibility to peer pressure and is revealing the period to be one of heightened neuroplasticity, or capacity for the brain to change.”

Writing in the Boston Globe, Harvard law professor and former federal judge Nancy Gertner suggested that adolescent psychology and neuroscience are worthy of consideration:

“He was 19, just barely past the date at which the law acknowledges an adolescent’s immature brain. But while the law recognizes 18 as the cutoff point for the death penalty, neuroscience suggests that the period of relative brain immaturity stretches into the early 20s.”

David Hoose, death penalty lawyer and legal analyst, noted that the trial has many recent legal precedents. "This is a very hot issue in criminal justice circles these days ... that young men really do not mature fully in terms of the neuroscience until they are in the mid-20s," he said. "This is a kid who one minute is goofing around with his college buddies and the next minute is looking at jihadi movies."



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April
12
 

US bioethics commission releases report on neuroscience and law

On March 26 the US Presidential Commission into the Study of Bioethical Issues released the second volume of its report in developments in neuroscience. Volume II of Grey Matters: Topics at the intersection of neuroscience, ethics, and society examines three key areas in which neuroscience intersects with ethics.   

Perhaps the most topical – considering media discussion surrounding the sentencing of Boston Bombing perpetrator Dzhokhar Tsarnaev, is the role of neuroscience in the courtroom. The report catalogues the various contributions that neuroscience could potentially make to our understanding of human action and the criminal mind, and also examines ethical concerns such as the potential for misinterpretation and overstatement of the implications of neuroscientific research.

Among a number of recommendations, the authors of the report call for educational tools to help judges and lawyers grasp the rudiments of neuroscience.

“Government bodies and professional organizations, including legal societies and nonprofit organizations, should develop, expand, and promote training resources, primers, and other educational tools that explain the application of neuroscience to the legal system for distribution to members of the public, jurors, judges, attorneys, and others.”

The report also cautions against the perennial temptation to overstate the implications of scientific research.  

“Neuroscientists, attorneys, judges, and members of the media should not overstate or rely too heavily on equivocal neuroscientific evidence to draw conclusions about behavior, motivations, intentions, or legal inferences.”

In an interview with The Atlantic, Stephen Hauser of the University of California spoke of the ideal that scientists and legal practitioners should aim for:

“The key issue here is that a sophisticated knowledge of science, its strengths and limitations, is entered into the deliberative process during court proceedings. And this will require a back and forth interaction between sophisticated neuroscientists and sophisticated legal minds.” 



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April
12
 

Informed consent dilemma: Jehovah witness and child die

The deaths in Australia of an unborn child and its mother who refused a blood transfusion because she was a Jehovah’s Witness have highlighted the risks of patient autonomy.

In a case in the Internal Medicine Journal, doctors at Prince of Wales Hospital in Sydney report that a 28-year-old woman with acute promyelocytic leukaemia refused all blood products even though she knew that her decision might lead to her death. Her foetus died in utero and she died several days later.

What were the responsibilities of the doctors treating the woman? The staff were distressed because they believed that both deaths were easily avoidable. However, the doctors note that: “

“maternal autonomy was respected – which reflects broad legal and ethical consensus that competent adults may refuse any form of medical intervention – even where that intervention is lifesaving… Circumstances where foetal and maternal autonomy conflict, or where foetal beneficence conflicts with maternal autonomy, create challenges…  as more foetal-specific treatments become available, conflict between the best interests of mother and foetus will increase.”

Underlying the dilemma is the realization that if the woman had asked doctors to terminate the life of her child, they would almost certainly have complied – also out of respect for her autonomy. Sometimes informed consent leads to agonizing dilemmas. 



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April
12
 

WHO alarmed by C-section rise

There is no evidence that a Caesarean section rate of more than 10% saves the lives of mothers or babies, says the World Health Organization. In a new statement it recommends that C-sections be performed based only on the needs of the patient, rather than focusing on target rates.

Caesarean section is one of the most common surgeries in the world, with rates continuing to rise, particularly in high- and middle-income countries. In the US, about one in three women gives birth via C-section. In Brazil more than half of all births are C-section, with rates rising to 80% in private hospitals.

However, WHO says that there is no evidence showing the benefits of caesarean delivery for women or infants who do not require the procedure. As with any surgery, C-ections are associated with short and long term risk which can extend many years beyond the current delivery and affect the health of the woman, her child, and future pregnancies. These risks are higher in women with limited access to comprehensive obstetric care.

Since 1985, the international healthcare community has considered the “ideal rate” for caesarean sections to be between 10% and 15%. New studies reveal that when caesarean section rates rise towards 10%, the number of maternal and newborn deaths decreases. But beyond that mortality rates do not improve.

“These conclusions highlight the value of caesarean section in saving the lives of mothers and newborns,” says WHO’s Marleen Temmerman. “They also illustrate how important it is to ensure a caesarean section is provided to the women in need - and to not just focus on achieving any specific rate.”

Across a population, the effects of caesarean section rates on maternal and newborn outcomes such as stillbirths or morbidities like birth asphyxia are still unknown. More research on women’s psychological and social well-being is still needed. Due to their increased cost, WHO says, high rates of unnecessary caesarean sections can pull resources away from other services in overloaded and weak health systems.



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April
12
 

Health workers faces dual loyalty in US jails

Guantanamo Bay is not the only place where American health workers’ ethics clash with the need for security. This is also the case in American jails, according to a two-year study of New York's Rikers Island jail complex published in Harvard’s Health and Human Rights Journal.

The authors, who are all involved in New York’s correctional services health system, express concerns “about the extent to which the mental health service is involved in assessments that are part of the punishment process of the security apparatus.” In particular, they question whether health workers should be involved in assessing inmates for solitary confinement.

“The most prominent example of dual loyalty is the ‘clearance’ of patients for punishment in solitary confinement. Security staff members assess whether an inmate has broken the rules of the jail or prison and then presents the inmate to health staff for confirmation that the inmate is physically and mentally sound enough to be placed in solitary confinement, generally described as 23 hours per day in a small cell, with an hour per day of recreation and some nominal services such as showers and occasional phone calls. …

“Whatever the security reasoning for placement in such units, the participation of health staff in this process is cumbersome, time intensive, of questionable value, and does not reflect a patient-health provider interaction that is in the patient’s best interest. In fact, many institutions employ health and mental health services expressly to maintain the practice of solitary confinement.”

The problem is complex. The study found more than one-third of mental health workers believe that their ethics are regularly compromised. However, correctional services officers often believe that inmates exploit the sympathy of health workers to avoid punishment. "Don't tell us that this inmate who came in fine yesterday and didn't have no problems, all of the sudden now that it's time to go to the bing [solitary], he's got psychological problems," Norman Seabrook, president of the Correction Officers' Benevolent Association, told Associated Press



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April
12
 

Controversial doco investigates China’s organ donation system

China’s organ transplant system is highly controversial. The government admits that most of the organs used to come from executed prisoners. The official policy changed on January 1, when the head of China’s organ donation committee, Huang Jiefu, announced that only voluntarily donated organs from civilians can be used in transplants.

There are many reports that organs have come from prisoners of conscience, especially Falun Gong members, not criminals on death row. This is angrily denied by the Chinese government.

In this documentary, “Human Harvest: China’s Organ Trafficking”, which appeared on Australia’s SBS channel, two Canadian researchers, David Kilgour and David Matas, insist that there is sufficient evidence to believe claims of organ harvesting by the Falun Gong. (If the YouTube video is not visible in your region, here is a link to an article on the SBS website.) 



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April
12
 

Victims of Guatemala syphilis experiments to sue Johns Hopkins

Victims of the infamous Guatemala syphilis experiments have filed a lawsuit against Johns Hopkins University, which they say was complicit in authorising the research.

During the experiments, which took place in the 1940s and 50s and were overseen by US researcher Dr John C. Cutler, many hundreds of unsuspecting Guatemalans were infected with syphilis, gonorrhoea and other sexually-transmitted diseases.

The US$1 billion lawsuit seeks to hold the university responsible for the experiments, because its doctors held important roles on panels that reviewed federal spending on sexually-transmitted-disease research, including on the experiments in Guatemala. It also names the Rockefeller Foundation and pharmaceutical company Bristol-Myers Squibb as defendants.

The plaintiffs go as far as to claim that Johns Hopkins was actively involved in the experiments:

"[they] did not limit their involvement to design, planning, funding and authorization of the Experiments; instead, they exercised control over, supervised, supported, encouraged, participated in and directed the course of the Experiments."

Johns Hopkins says that the allegations are groundless. Kim Hoppe, a spokesperson for the university, told The Baltimore Sun that the suit “is an attempt by plaintiffs’ counsel to exploit a historic tragedy for monetary gain.”

Legal experts said the lawsuit's arguments could be a stretch. Today, professors who frequently serve on a volunteer basis with the National Institutes of Health, for example, are generally considered to be acting independently and not in their capacity as university faculty, said Holly Fernandez Lynch, executive director of the Petrie-Flom Center for Health Law Policy, Biotechnology and Bioethics at Harvard University Law School.  



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April
12
 

Kansas passes novel anti-abortion bill

Governor Sam Brownback   

The fierce battle over abortion legislation in the US has taken another turn – this time in Kansas. On Tuesday Republican governor Sam Brownback signed into law a bill that bans the controversial “dilation and evacuation” abortion procedure. The bill, drafted by the National Right to Life Committee to Kansans for Life, was approved by a significant majority in both the senate and legislature.

In this procedure, the woman’s cervix is dilated and the foetus removed using a surgical vacuum, forceps, a curette, and other instruments.

The bill gives the procedure the dysphemistic name ‘dismemberment’. It is banned except when necessary to save a woman’s life or prevent irreversible damage to her physical health. Doctors cannot use forceps, clamps, scissors or similar instruments on a fetus to remove it from the womb in pieces. Pro-life groups have welcomed the law as a positive step toward stemming the high abortion rate in the US.

Two abortion rights groups that operate Kansas clinics with abortion services, Trust Women and Planned Parenthood of Kansas and Mid-Missouri, plan to challenge the law. They believe that it is vulnerable as it bans some abortions before a foetus can survive outside the womb and contains no mental health exception for the mother. 



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April
03
 

Kristján Kristjánsson on virtuous medical practice

Professor Kristján Kristjánsson is professor of Character Education and Virtue Ethics at the University of Birmingham, and Deputy Director of the Jubilee Centre for Character and Virtues. Together with five other academics he recently published a major research report on the role of the character and virtues in the medical profession in Britain. 

The paper was based on research involving four medical schools in the UK, and medical practices in roughly the same geographical areas as those schools. A survey was answered by 549 1st year undergraduates, final-year students and experienced professionals. 85 of those were subsequently interviewed. 66% of the experienced doctors were GPs.

Professor Kristjánsson recently spoke with BioEdge about the broader implications of his research.

*****

Xavier Symons: Based on your research, do you believe there is there a problem with cognitive and/or deontological approaches to teaching medical ethics? 

Kristján Kristjánsson: I did consider this a problem – for purely philosophical reasons – before we started the research project, and the findings provided empirical backbone to those concerns. They revealed a strange mismatch in the UK between general medical ethics (bioethics), where virtue ethics has become the theory of choice, and professional medical ethics which is still focused almost entirely on formal rules, regulations and codes of conduct, or highly abstract deontological principles (such as respect for patient autonomy).

"medical phronesis is not inborn – it requires attention and training, both in medical education and further in the workplace." 

The doctors – especially the more experienced ones – complained that the rules they had learned were too general, with no attention to particularities such as special circumstances and special personal characteristics of individual patients. They also complained about the over-estimation of compliance and the under-estimation of professional judgement. Some attention seems to be paid in medical ethics education to what used to be called “bedside manners” (dress code, manner of speaking, demeanour, politeness, etiquette, cultural sensitivity). However, between the codes and the manners the “moral middle” gets squeezed out: moral character as learning to perceive moral salience, responding emotionally in the right way and making practically wise decisions based on the most virtuous course of action. As many doctors correctly pointed out, medical phronesis is not inborn – it requires attention and training, both in medical education and further in the workplace. 

In ‘Virtuous Medical Practice’ you asked doctors what they thought were the most important virtues for a medical practitioner to acquire. Was there a general consensus?

The consensus was astounding across the three cohorts, much more so than in our two parallel projects into virtues in teachers and lawyers. Fairness, honesty, judgement, kindness, leadership and teamwork scored highest as the virtues of the ideal practitioner. The respondents attributed the same strengths to themselves, except for judgement and leadership, and those also fed into the way they responded to the moral dilemmas in the survey. Some gender differences were noticed (with kindness scoring higher for women).

"Most of the conflicts that the doctors mentioned did not involve a choice between virtue and vice, but rather hard choices between two or more competing virtues."

What do you think their answers show?

They seem to show that students enter medical studies with a fairly mature and robust view of the kind of doctor they want to be, and this view does not change much during the course of their study or work experience. An anecdotal explanation could be that quite a few students enter medicine from families where a parent or a grandparent is also a doctor. Thus, professional virtues and values may filter through down the generations. On a more negative note, the most disconcerting finding of the study, in my view, was that more than 20% of experienced doctors say they (“sometimes” or “often”) experience difficulties in living out their characters, that is they fail to live up to their own ideals and moral expectations of themselves. The reasons they give are not surprising, however: too little time (to consult, discuss, treat), unrealistic targets and shrinking budgets.

Do you yourself share these doctors’ view of important virtues? (i.e. would you have selected other virtues)?

I find the above list reasonable as such. However, lists of this kind are less important than the capacity to develop the meta-virtue of phronesis for adjudicating virtue conflicts. Most of the conflicts that the doctors mentioned did not involve a choice between virtue and vice, but rather hard choices between two or more competing virtues. 

"Consultation cannot be learnt from rule books, either about abstract principles or earthbound mannerisms."

Based on your research, what do you think are the most important changes that need to be made to medico-ethical education models? 

The main message I take from this research is the time-honoured one that the core currency in medicine is consultation. Consultation cannot be learnt from rule books, either about abstract principles or earthbound mannerisms. It involves trustworthiness which is a moral virtue, not a rule or a codifiable behavioural procedure. At present, medical ethics education in the UK does not aid aspiring doctors in developing such virtues. In the Report, we conclude that medical ethics education needs to be more virtue based, focusing on a) virtue literacy, b) virtue responsiveness (recognising virtue-relevant situations) and c) the development of practical moral wisdom (phronesis), for example by providing time and space for medical students to discuss and reflect upon the moral dilemmas that all doctors will meet with in their practice.  



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
31
 

CRISPR technology brings precise genetic editing – and raises ethical questions

A group of leading biologists earlier this month called for a halt to the use of a powerful new gene editing technique on humans. Known by the acronym CRISPR, the method allows precise editing of genes for targeted traits, which can be passed down to future generations.

With this explainer, we’ll look at where this technique came from, its potential and some of the issues it raises.

CRISPR stands for clustered regularly interspaced short palindromic repeats, which is the name for a natural defense system that bacteria use to fend off harmful infections.

Bacteria are infected by other microorganisms, called bacteriophages, or phages. The intricate details of the mechanism were elucidated around 2010 by two research groups led by Dr Doudna of the University of California Berkeley and Dr Charpentier of Umeå University in Sweden.

The CRISPR system recognizes specific patterns of DNA from the foreign invaders and decapacitates them by cutting the invader’s DNA into pieces. The way that the bacteria target specific DNA and cleave it gave scientists a hint of its potential in other applications.

In 2013, two research groups, one lead by Dr Zhang of Massachusetts of Institute of Technology and the other by Dr Church of Harvard University, successfully modified this basic mechanism and turned it into a powerful tool that can now cut human genomic DNA at any desired location.

The ability to cut DNA or genes at specific locations is the basic requirement to modify the genome structure. Changes can be made in the DNA around the cleavage site which alter the biological features of the resulting cells or organisms. It is the equivalent of a surgical laser knife, which allows a surgeon to cut out precisely defective body parts and replace them with new or repaired ones.

Tool for gene discovery   

Scientists have long sought after this sort of genome editing tools for living cells. Two other technologies, called zinc-finger nucleases and TALEN (transcription activator-like effector nuclease) are available to achieve the same result. However, the CRISPR technology is much easier to generate and manipulate. This means that most biological research laboratories can carry out the CRISPR experiments.

As a result, CRISPR technology has been quickly adopted by scientists all over the world and put it into various tests. It has been demonstrated to be effective in genome editing of most experimental organisms, including cells derived from insects, plants, fish, mice, monkeys and humans.

Such broad successes in a short period of time imply we’ve arrived at a new genome editing era, promising fast-paced development in biomedical research that will bring about new therapeutic treatments for various human diseases.

The CRISPR technology offers a novel tool for scientists to address some of the most fundamental questions that were difficult, if not impossible, to address before.

For instance, the whole human genomic DNA sequence had been deciphered many years ago, but the majority of information embedded on the DNA fragments are largely unknown. Now, the CRISPR technology is enabling scientists to study those gene functions. By eliminating or replacing specific DNA fragments and observing the consequences in the resulting cells, we can now link particular DNA fragments to their biological functions.

Recently, cells and even whole animals with desired genome alterations have successfully been generated using the CRISPR technology. This has proven highly valuable in various biomedical research studies, such as understanding the cause and effect relationship between specific DNA changes and human diseases. Studying DNA in this way also sheds light on the mechanisms underlying how diseases develop and provides insights for developing new drugs that eliminate specific disease symptoms.

With such profound implications in medical sciences, many biotech and pharmaceutical companies have now licensed the CRISPR technology to develop commercial products. For example, a biotech company, Editas Medicine, was founded in 2013 with the specific goal of creating treatments for hereditary human diseases employing the CRISPR technology. However, products derived from the use of CRISPR technology are yet to hit the market with FDA approval.

Call for ethical guidelines

With the CRISPR technology, scientists can now alter the genome composition of whole organisms, including humans, through manipulating reproductive cells and fertilized eggs or embryos. Those particular genetic traits are then passed down through generations. This brings hope to cure genetic defects that cause various hereditary human diseases, such as cystic fibrosis, haemophilia, sickle-cell anemia, Down syndrome and so on.

Unlike the current approaches of gene therapy which temporarily fix defective cells or organs through the introduction of corrected or functional genes, the CRISPR technology promises to correct the defect in the reproductive cells, producing progenies that are free of the defective gene. In other words, it can eliminate the root causes of hereditary human diseases.

In theory,then, hereditary features that people consider advantageous, such as higher intelligence, better body appearance and longevity, can be introduced into an individual’s genome through CRISPR mediated reproductive cell modifications as well.

However, scientists do not yet fully understand all the possible side effects of editing human genomes. It is also the case, that there is no clear law to regulate such attempts.

That’s why groups of prominent scientists in the field have recently initiated calls for ethical guidelines for doing such modifications of reproductive cells. The fear being that uncontrolled practice might bring about unforeseen disastrous outcomes in long run.

The guidelines call for a strong discouragement of any attempts at genome modification of reproductive cells for clinical application in humans, until the social, environmental, and ethical implications of such operations are broadly discussed among scientific and governmental organizations.

There is no doubt that the exciting and revolutionary CRISPR technology, under the guidance of carefully drafted and broadly accepted rules, will serve well for the well-being of human kind.

The ConversationShouguang Jin is Professor of Molecular Genetics and Microbiology at University of Florida. This article was originally published on The Conversation. Read the original article.



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March
29
 

Brittany Maynard speaks from grave to California senators

The leading assisted suicide lobby group, Compassion & Choices, has scored another public relations coup with the release of a third Brittany Maynard video. Nineteen days before she committed suicide on November 1, Brittany recorded a video demanding that California legislators endorse assisted suicide.

"The decision about how I end my dying process should be up to me and my family under a doctor's care. How dare the government make decisions or limit options for terminally ill people like me." 

After watching it this week, California’s Senate Health Committee approved an End-of-Life Option Act (SB 128) by a vote of 6 to 2. The bill will now be debated by the Senate.

Brittany was only 29 when she discovered that she had terminal brain cancer. Unable to access assisted suicide in her home state of California, she and her husband moved to Oregon where it is legal. In the final weeks of her life, Maynard cooperated with Compassion & Choices in launching a campaign for assisted suicide in California and nationwide. She was interviewed on CNN and in some major newspapers and magazines. With a professional PR team organised by C&C, she made two touching videos which have been seen millions of times around the globe.

“Making aid in dying a crime creates undue hardships and suffering for many people who are terminally ill and suffering tremendously,” Maynard said in the posthumous video, which was recorded on October 13 last year. “It limits our options and deprives us of our ability to control how much pain and agony we endure before we pass.”

She also declared that she was repelled by the idea terminal sedation, a method of euthanasia in which a comatose patient dies of starvation and dehydration.

The Senate Committee also heard testimony from opponents of SB 128. Marilyn Golden, senior policy analyst for the Disability Rights Education and Defense Fund, told the senators that there would be strong financial incentives for people to pressure disabled and depressed people into ending their lives. “It’s a deadly mix to combine our broken, profit-driven healthcare system and assisted suicide, which would instantly become the cheapest treatment,” she said. 



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March
29
 

International drive to stop organ trafficking

Fourteen European nations have signed the first international treaty on organ trafficking.

The convention, which was initiated by the Council of Europe, was signed by Albania, Austria, Belgium, the Czech Republic, Greece, Italy, Luxembourg, Norway, Moldova, Poland, Portugal, Spain, Turkey and the United Kingdom. It is open for signature by any state in the world and enters into force when five states have ratified it.

Council of Europe Secretary General Thorbjørn Jagland described organ trafficking as “one of the most exploitative trades on the planet”:

It is hard to put exact figures on it, but we know that organ trading is big money. A young person from Eastern Europe might sell a kidney for 2,500 Euros. In Ukraine we know of cases where recipients have paid up to 200,000 Euros. This is one of the world’s top ten illegal money-making activities generating an estimated US$1.2bn in illegal profits globally every year.

It is believed to fund terrorism too. Just last month the Iraqi Ambassador to the UN asked the Security Council to investigate claims that the self-proclaimed ‘Islamic State’ are harvesting organs in order to bankroll their terror campaign.

Although organ trafficking is already illegal in most countries, there are many loopholes which the convention tries to close.

First, it criminalises organ trading even if there has been no trafficking, as many donors travel for surgery without being coerced. Second, it criminalises cooperation in organ trafficking. “It allows us to bring to justice the whole network of individuals driving the deal,” says Mr Jagland. And third, it provides for protection for the victims of trafficking, who may be both donors or recipients. 



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March
29
 

Britain’s first IVF paternity case

Another dispatch from the Wild West of assisted reproductive technology. A British academic has been awarded £100,000 in damages and costs because his former wife tricked into believing that a son conceived with IVF was his, when the real father was her long-time lover. It is thought to be Britain’s first paternity suit involving IVF.

In 2004 the unnamed couple sought IVF in a Barcelona clinic. But instead of using her husband’s sperm, the wife used her lover’s. Over the next six years she continued with the charade, placing his name on the birth certificate, securing a generous maintenance payment after their divorce in 2010, and registering him as the father at the child’s school. Only in 2011 did she reveal the fraud. He said in the London Telegraph:

“It has deeply affected me and my family but importantly their own son – and my ex-son – which is absolutely appalling. This year-long litigation has been incredibly difficult and stressful and I have sometimes felt ‘I think I’m trapped in the wrong film’. “Not only did my ex-wife commit this deceit but she misled her own child too.”



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March
28
 

After Germanwings: more psychological tests for pilots?

With French prosecutors saying that the Germanwings co-pilot Andreas Lubitz deliberately flew flight 4U9525 into a mountainside, there have been calls to introduce new and potentially ‘intrusive’ psychological testing procedures for pilots.

Former US aviation regulator Ken Quinn has called for more robust background screening and mental checks of new and experienced pilots. This may mean  “more intrusive checks of psychological history” than labour groups have historically accepted.

Psychologist and author Terry Lyles suggested that pilots undergo routine psychological testing after their initial exam.

“We test people here in [the US] for all kinds of things, for just CEO positions and president positions. So someone who has the lives of 149 people behind them, they should be tested every way possible to make sure that they are competent, healthy, sane, alert. All those things should be taken into account, and that's why we do it here in the U.S.”

Psychological screening programs for prospective pilots vary between airlines. Ironically Lufthansa, Germanwings’ parent company, is widely seen as having one of the best recruitment screening programmes in the industry, carrying out in-depth interviews and psychological testing before candidates can begin its two-year pilot training programme and filtering out more than 90% of initial applicants.

Many experts believe that no degree of psychological screening could prevent situations like the recent Germanwings tragedy.

Hans-Werner Teichmüller, president of the Deutsche Fliegerarztverband, an association of German doctors who examine pilots and flight crew, said that a resourceful pilot could always evade detection. “A pilot who intends to do something like this could be skilful enough to pass as a well-structured person, even if they were in danger of suicide,” he said. “Even with an examination process, you wouldn’t have 100% safety.”



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
28
 

The growing sperm bank industry

The sperm bank industry has been rapidly growing with profits to boot, according to an article published in the Financial Times this week.

There are a number of sperm bank clusters around the world, but one of the biggest is in Denmark, where sperm bank companies turn over huge profits each year in exchange for providing women from around the world with the opportunity to bear children. 

Danish sperm banks earned US$152 million in 2012 alone, according to the consultancy Copenhagen Economics. The multinational giant Cryos International has its headquarters in Demark.

Sperm banks around the world have been thriving due to certain sociological trends, such as the “delayer boom” — the trend for women to put off having children until they reach an age at which their fertility is reduced — and the growing acceptance in many Western societies of single-parent or same-sex families.

Most sperm donors chose to remain anonymous, and are paid nominal amounts for their donation. Sperm is sold at variable prices, depending among other factors on the amount of information available about the donor.

There are, however, concerns about a lack of regulation on sperm being shipped internationally. The number of children born to sperm donors could be much higher than authorities think, as there is no real way of accurately monitoring supply. Cryos and many of its US counterparts ship directly to women’s homes, which means women can self-inseminate and authorities might never find out.

Authorities are also concerned about the number of babies that a sperm donor could potentially father. The average Cryos donor fathers 25 children, but some could have 100 offspring. There are claims that some men have 200. 

Restrictions have been imposed on sperm banks in many Western nations. These limits, however, differ between nations. The possibility of international shipments makes laws in different countries less effective. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
28
 

Iran debates birth control restrictions

Iran plans to introduce major restrictions on the availability of birth control methods in a bid to stop rapid population decline. 

The government is currently considering two related bills intended to aid an increase in the birth rate.

One proposed law, bill 446, would curb women's use of modern contraceptives, outlaw voluntary sterilization [including vasectomies], ban the provision of information on contraceptive methods and dismantle state-funded family planning programs.

Another, bill 315, would mandate that organizations prioritize married men and women with children when hiring for specific jobs. 

International observers have decried the proposed reforms. Amnesty International warned that the bill could have "devastating consequences" for single women or women in abusive relationships. A spokeswoman for the Middle East and north Africa said:

“The authorities are promoting a dangerous culture in which women are stripped of key rights and viewed as baby-making machines rather than human beings with fundamental rights to make choices about their own bodies and lives..

“The bills reinforce discriminatory stereotypes of women and mark an unprecedented move by the state to interfere in people’s personal lives. In their zealous quest to project an image of military might and geopolitical strength by attempting to increase birth rates, Iran’s authorities are trampling all over the fundamental rights of women – even the marital bed is not out of bounds.”

But many Iranian politicians believe the legislative changes are vital to address a serious demographic crisis.

In October 2014, Iran’s supreme leader, Ayatollah Ali Khamenei urged Iranians to help increase the country's population, which he described as aging. "If we move forward like this, we will be a country of elderly people in a not too distant future," Khamenei said (according to the semi-official Fars news agency). "Why do some [couples] prefer to have one … or two children? Why do men or women avoid having children through different means?" the Iranian leader wondered. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
28
 

In defence of state-mandated eugenics

The notion of a state-organised eugenics programs is enough to unsettle the most indifferent in our society. 

The idea, however, may be gaining traction in academic circles. In a recent article in the Journal of Applied Philosophy, sociologist Tim Fowler defends hypothetical state-run eugenics initiatives.  

Fowler speculates about a world in which human enhancements are cheap and readily available.

The temptation in this situation is to put enhancement decisions in the hands of parents. Fowler, however, believes that entrusting parents with the ability to modify their kids as they wish could be ethically problematic. Such a move could allow “parents to reduce the real freedom of their children”, and “allow them to act in such a way that they directly contribute to the creation of social problems.”

Rather than repudiating the idea all together, Fowler considers a state-run alternative. He argues that the same justification given for state run education could be used for state-run eugenics initiatives.

“If one accepts the basic premise that enhancement and education are morally similar, then under certain circumstances the decision not to enhance looks precisely like the decision not to educate. Those same arguments which justify a state mandate to educate would apply in this case, and a state mandate goes beyond the requirements of the ‘Parental Choice’ view of enhancement control.”

Fowler rejects claims that his argument could be used to justify the infamous eugenics programs of WWII:

“My view promotes an account of human flourishing tied to tolerance and personal autonomy, whereas, for example, the Nazi program of propaganda tried to promote a view of human flourishing based on militaristic ideals and the intrinsic superiority of a master race.”

He goes as far as arguing that his eugenics program promotes the liberal ideal:

“Designing policies to promote tolerance, autonomy and opportunity above parental objections is not illiberal, but is in fact the outcome of a deep commitment to liberal values.” 

A thought-provoking essay, perhaps. The twitterati were not particularly impressed. Author Matthew Anderson had this to say: “I'm adding this article to the "You can find an academic to defend just about anything" file.”



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March
27
 

US think tank publishes report on risks of assisted suicide

For friends and foes, it’s hard to go past this succinct summary of arguments against assisted-suicide and euthanasia by Ryan T. Anderson, of The Heritage Foundation in Washington DC. Here’s the abstract:

Allowing physician-assisted suicide would be a grave mistake for four reasons. First, it would endanger the weak and vulnerable. Second, it would corrupt the practice of medicine and the doctor–patient relationship. Third, it would compromise the family and intergenerational commitments. And fourth, it would betray human dignity and equality before the law. Instead of helping people to kill themselves, we should offer them appropriate medical care and human presence. We should respond to suffering with true compassion and solidarity. Doctors should help their patients to die a dignified death of natural causes, not assist in killing. Physicians are always to care, never to kill.



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March
21
 

The bioethics of Googling

Is it ethical to Google your patients? A recent article in the Journal of General Internal Medicine examines this question, with Penn State College of Medicine researchers contending that professional medical societies must update or amend their Internet guidelines to address the ethics behind it.

“Many physicians would agree that seeking information about their patients via Google seems to be an invasion of privacy, violating trust between patients and their healthcare providers,” explain the researchers. “However, it may be viewed as ethically valid, and even warranted under certain circumstances.”

The article examines two scenarios in which ‘googling’ a patient is taken to be ethically permissible. One involves contacting patient whose genetic results are reassessed after many years and revealed to contain a deleterious mutation. The other involves a patient whose genetic counsellor suspects is lying about her family history of cancer. 

Abstracting from these two fictional scenarios, the researchers suggest a number of general situations in which ‘googling’ one’s patient would be acceptable.

The researchers label the lack of current guidelines the “google blind-spot”, and suggest that medical associations have an ethical imperative to address the issue. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
21
 

Dolce & Gabbana spark internet frenzy over IVF

Dolce & Gabbana's latest show celebrates maternity 

The marquee bioethics story of the week comes from the catwalks of Milan. In an interview in the Italian magazine Panorama, gay luxury fashion designers Stefano Gabbana and Domenico Dolce attacked same-sex marriage, IVF and surrogacy. Twitter and Instagram instantly became incandescent with indignation over a few score of words by the billionaire designers.

Dolce and Gabbana lived as a couple for 20 years, but split up amicably in 2005, although they remain prodigiously successful business partners. When asked if they would like to be fathers, Dolce replied, “I’m gay, I cannot have children.” He added that he feels that “you are born to a mother and a father — or at least that’s how it should be. I call them children of chemistry, synthetic children. Rented uterus, semen chosen from a catalogue.”

That’s not all. Dolce, 57, who has identified as a practicing Catholic, said:  “No chemical offspring and rented uterus: life has a natural flow, there are things that should not be changed.” Dolce then added: “You are born to a mother and a father – or at least that’s how it should be. I call children of chemistry, synthetic children. Rented uterus, semen chosen from a catalog.”

Gabbana, 53, added: “The family is not a fad. In it there is a supernatural sense of belonging.” And Dolce chimed in: “Procreation must be an act of love; now even psychiatrists are having to deal with the effects of these experiments.”

The five or six throwaway sentences provoked a nuclear response, first from gay icon Elton John, who is the father of two children of a surrogate mother, and then from other celebrities and the media.

"How dare you refer to my beautiful children as 'synthetic' [said Elton John on Instagram]. And shame on you for wagging your judgemental little fingers at IVF ... Your archaic thinking is out of step with the times, just like your fashions. I shall never wear Dolce and Gabbana ever again. #BoycottDolceGabbana."

The Hollywood director Ryan Murphy tweeted that Dolce & Gabbana’s clothes are “as ugly as their hate.” And so on.

It’s hard to know what lessons to draw from this searching and incisive debate on assisted reproduction, except that the gay community is probably not as monolithic as the media portrays on issues like same-sex marriage, same-sex parenting, surrogacy and IVF. More conservative views, such as the Catholic position that procreation should be reserved for traditional marriage, still have street cred in unlikely places. 

Could it be a marketing ploy for two canny businessmen who want to cement their reputation for, surprisingly, a maternity-friendly fashion? Their latest show featured a number of stylishly pregnant models, along with children. 

The spat continues.



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March
21
 

23andMe branches into pharma

US-based genetic testing company 23andMe intends to use its customers’ data for ground-breaking drug research and development programs.

The company has in the past collaborated with medical researchers and pharmaceutical companies by licensing access to genetic information contained in its database. But last week it revealed it plans to set up its own pharmaceutical wing to identify new drug targets for both common and rare diseases.

Researchers believe mutations and other genetic information in the 23andMe database will reveal potential drug targets for a range of diseases. Healthy carriers of mutated genes may offer insights into why some people do not develop disease.

The announcement comes with the appointment of Richard Scheller, former Genentech vice president of research and early development, as chief scientific officer and who will lead a newly created therapeutic subdivision. Professor Scheller said that ‘human genetics has a very important role to play in finding new treatments for disease’.

"I have dedicated my life to research aimed at fulfilling unmet needs for very sick people. I believe that human genetics has a very important role to play in finding new treatments for disease. I am excited about the potential for what may be possible through 23andMe's database. It is unlike any other."

In response to potential ethical concerns that could arise from using customers' data in this way, 23andMe co-founder Anne Wojcicki insisted that its research consent policy will retain the right to opt-out. Around 80% of 23andMe's 875,000 customers have agreed that it can use their health data for medical research.



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March
21
 

IVF law to be debated in Poland

Poland’s parliament will shortly debate draft legislation about IVF – a procedure that de facto legal in the country but lacking a clear statutory framework.   

The proposed bill, put forward by the ruling Civic Platform party, would allow married and cohabiting couples access to the procedure after 12 months of trying to conceive. The age limit is likely to be capped at 35 for women.

The bill would also ban sales and destruction of human embryos, cloning of human embryos and manipulation of human DNA.

Polish Prime Minister Ewa Kopacz said she was concerned about inadequate legal structures regulating IVF. “The current lack of a legal framework for IVF is morally ambiguous and, from a medical standpoint, potentially dangerous”.

The proposed legislation comes in the wake of a Polish hospital IVF mix-up that led to one woman giving birth to the child of another female patient.

Conservative politicians in the Civic Platform party are likely to oppose the bill, as are many politicians from the opposition Law and Justice party.

1,433 children have been born from IVF in Poland since the procedure was made available 25 years ago. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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March
21
 

50 or 60 Belgian patients euthanased annually for psychiatric reasons

At least 50 patients are euthanased each year for purely psychiatric reasons, says the leading figure in Belgian euthanasia, Dr Wim Distelmans. In an interview in the Belgian magazine Humo, he says:

Manic-depressive patients, in their manic moments, are capable of doing the most improbable things: plundering their bank accounts, staying for weeks in five-star hotels, buying several cars in a single day. At that stage they are not mentally competent, obviously. But in moments of depression, exhausted … they are certainly competent. Then they can say, for example: "I have lived through crazy highs and lows for 30 years; I've tried everything to break that infernal cycle, including psychiatric hospitals, but now I'm back on the baseline, and I know I have a few weeks left before I'm sinking into the depths or rising to heights.”

These are people who are eligible for euthanasia.

This is a small group - 50 to 60 patients - but it is not negligible number: 2 to 3 percent of the 1,924 people who were euthanased last year. Usually they are not old, but they have suffered for a long time. They feel that they are no longer comfortable in this world: "All my relationships have failed." They are in their 20s or 30s; they have been followed medically since they were children; they have a history of institutionalization. Their parents were originally radically against euthanasia, but eventually they agreed with it because nothing more could be done…

We insist that the euthanasia occurs in the presence of the family. That is comfortable for the patient, and it makes it easier for the family later on. They know it was what the patient wanted.

But a lot of psychiatric patients come from dysfunctional families and veto the presence of certain family members because "They are the cause of my misery." You should respect that.

Dr Distelmans feels that euthanasia (Levensbeëindiging Op VErzoek) is a form of love, as this stylized photo from the Belgian media shows: a silhouette of Distelmans's familiar profile, with the Dutch word forming the English word "love". 



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March
21
 

Euthanasia on the rise in Flanders region

Almost one in 20 people in northern Belgium died using euthanasia in 2013, more than doubling the numbers in six years, a study released Tuesday showed.

The study, published in the New England Journal of Medicine, drew upon the records of nearly 4000 doctors in Belgium’s Flanders region.

While a 2007 survey showed only 1.9 percent of deaths from euthanasia in the region, the figure was 4.6 percent in 2013.

Those requesting euthanasia are mainly highly educated and between 65 and 79, the study found. Terminally-ill cancer patients form the biggest group, although cases in all categories are rising. 

“This finding indicates that, after 11 years of experience, euthanasia is increasingly considered as a valid option at the end of life in Belgium”, the authors of the paper concluded.

“Euthanasia has been increasingly accepted by the patients as a valid option at the end of their life. They are increasingly asking for it,” said Ghent University ethics professor Freddy Mortier. “Physicians themselves are more inclined to comply with the wishes of the patients.”



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March
21
 

Gray Lady gives two cheers for euthanasia

The New York Times is edging to a cautious endorsement of euthanasia and assisted suicide. In an editorial this week, it highlighted the case of Diana Rehm, a well-known personality from National Public Radio, whose husband, who suffered from Parkinson’s disease, chose to starve himself to death after reaching the end of his tether.

Maryland, where he died, is a state which does not allow assisted suicide.  “For him to go out that way, not being able to do anything for himself, was an insufferable indignity,” Ms Rehm said in an  interview.

Oddly, the editorial did not point readers towards action. It echoes the arguments of Compassion & Choices, the leading American assisted suicide lobby group, and averts to both the Catholic Church’s opposition and the problematic example of the late Jack Kevorkian, who killed at least 130 of his patients.

But it failed to get down to the nitty-gritty of all euthanasia legislation: is it safe? The American mugwump, with his mug on one side of the fence and his wump on the other, is alive and well. 



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March
21
 

Fake Australian doctor runs IVF clinic for more than 10 years

A dispatch from the Let’s-Hope-This-Doesn’t-Happen-Too-Often Department. Australian health authorities are investigating an Italian man who practiced as a gynaecologist and IVF expert in Melbourne for more than a decade. He had offices in posh suburbs and advertised his better-than-average pregnancy rates.

Unfortunately Raffaele Di Paolo was only a Mr and not a Dr who appears to have attracted patients by adding a dash of homeopathic medicine to his treatment. He claimed to be a member of the “European Society Human Reproduction Endocrinology” which sounds like, but is not, the European Society of Human Reproduction and Embryology.

One of his duped clients told the Sydney Morning Herald that Di Paolo told her that he had turned to homeopathy because conventional fertility clinics were "money hungry IVF factories that herd women like cattle". Over two years she spent A$30,000 on his services, some of which were extremely bizarre. The paperwork and invoicing was shoddy and unprofessional. But when she voiced her concerns, he simply said, “Don't you worry Princess, it's all taken care of'."

Mr Di Paolo will appear in court later his month. 



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March
14
 

Organ trafficking in UK on the rise

Organ trafficking is often though to be a phenomenon of the developing world. A number of recent UK cases have indicated otherwise. A recent report by the UK’s National Crime Agency stated that there were two cases of organ trafficking in the country in 2014 – one involving a woman in her 30s, and another involving a boy as young as 12. Very little is known about the cases, other than that the organ traffickers were stopped before they could operate on the individuals. A spokesman for the Human Tissue Authority (HTA) stated that authorities had alerted them to the incidents. 

According to the World Health Organisation (WHO), as many as 7,000 kidneys are illegally obtained by gangs each year around the world.

The first reported case of human organ trafficking in the UK was in 2012. In 2013 a girl was brought from Somalia with the intention of removing her organs and selling them on to patients desperate for a transplant.

Chloe Setter, from child protection charity Ecpat UK, is concerned about the extent of trafficking in the country: ‘We know of just a handful of cases but we suspect these are the tip of the iceberg. Organ harvesting is prevalent in many countries. We have felt confident in the UK that we have robust systems and procedures in place in relation to transplants but this could be something that is happening underground and out of view."



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March
14
 

France divided over deep sleep bill

France’s parliament is set to debate a ‘deep sleep’ bill which, if passed, will allow terminally ill patients to be put into an irreversible comatose state and have life sustaining treatment withdrawn.

The bill, proposed by centre-right politician Jean Leonetti, aims to give patients with ‘hours or days to live’ the right to be placed under general anesthetic until the moment they die. “The patient has to be at the end of their life and suffering despite the treatment given,” Leonetti said. “When these elements are present, I [the doctor] am obliged to start sedation that is deep and continues until death.”

The sedation provided would be titrated such that there would be no chance of the patient regaining consciousness. Life sustaining treatment – such as artificial nutrition and hydration – may also be withdrawn.

Pro-life groups have criticised the proposed legislation, claiming it would authorize a passive form of euthanasia.  

In an open letter published in Le Monde on Monday, leaders from France’s three major monotheistic religions, Christianity, Islam and Judaism, described the bill as a threat to human dignity:  

“We are launching a joint appeal, anxious and pressing, that this possible new law will not in any way violate this basic principle: all human life must be respected particularly at the moment when it is most fragile”.

But pro-euthanasia advocates believe the bill does not go far enough. “Everyone says there is no suffering but nobody has ever been in that position [near death],” said Jean-Luc Romero, head of the Right to Die in Dignity association.



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March
14
 

UK woman wins right to refuse life-saving amputation

 

A dramatic example of the prominence of informed consent in medico-legal comes from Britain. A 62-year-old woman who has suffered from paranoid schizophrenia for most of her life has refused to allow doctors to amputate a gangrenous leg. Her instructions were upheld by a judge who said that choice is “a part of what it means to be human” and that an unwanted operation would be “criminal assault”.

The story of the unnamed woman began with a superficial foot infection in December. The wound swiftly became gangrenous and eventually the foot “fell off”. Doctors wanted to amputate her leg, but the woman refused. They appealed to the Court of Protection to order an operation which would save the woman’s life.

Despite her psychological disability, the woman was living a reasonably independent life and held down a responsible job. Mr Justice Peter Jackson said that she was intellectually capable of making an informed decision.

"Anyone capable of making decisions has an absolute right to accept or refuse medical treatment, regardless of the wisdom or consequences of the decision. The decision does not have to be justified to anyone. In the absence of consent, any invasion of the body will be a criminal assault. The fact that the intervention is well-meaning or therapeutic makes no difference…

"The right to decide whether or not to consent to medical treatment is one of the most important rights guaranteed by law. The temptation to base a judgment of a person's capacity upon whether they seem to have made a good or bad decision, and in particular upon whether they have accepted or rejected medical advice, is absolutely to be avoided.”

The woman is said to be reconsidering her decision to refuse a below-the-knee operation. 



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March
14
 

Swiss assisted suicide group notches up 27% rise in deaths

NOTE: an earlier version of this story exaggerated the increase in deaths, citing a 34% rise, because of a calculation error. Sorry. 

Exit, the assisted suicide group for German-speakers in Switzerland, recorded a 27% increase in deaths last year, rising from 459 in 2013 to 583. Membership grew by 20% to 86,000.

Bernhard Sutter, the CEO of Exit told Newsweek: “We are very happy that we are an organisation that is gaining members and that is now bigger than some political parties in Switzerland. It is quite a movement now, which gives us more political weight.” He hopes that Exit will reach 250,000 members within 10 years.

The rise in membership seems to be due to increased attention by the media says Mr Sutter. Applications surged last year after the highly publicized death of 62-year-old This Jenny, a popular politician with the Swiss People’s Party.

But he says that it is also due to a shift in social mores:

“There is a change in society today and people no longer just accept what doctors tell them. They don’t want to ask an authority how long they will have to suffer for. This is a society with a lot of freedom and choice, one that lives by its own terms.”

The figures for Exit’s Francophone counterpart will be released on April 25. 



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March
14
 

Terry Pratchett, novelist, Alzheimer’s campaigner and star euthanasia promoter, dies

British fantasy writer and star campaigner for assisted suicide Sir Terry Pratchett died this week a natural death surrounded by his family. He had been suffering from early-onset dementia for several years.

In the 1990s Sir Terry was the UK’s top-selling and highest-earning author. Over the course of his career he wrote 70 books which sold over 70 million copies. His fans loved his wry comic sense and imagined worlds. He was a flamboyant character, a media darling who always wore a large black fedora.

In 2007 he revealed that he had a form of Alzheimer’s disease and in 2009 he began to campaign for assisted suicide. In 2011 he narrated a highly controversial BBC documentary, “Choosing to Die”, which chronicled a trip to a Swiss suicide clinic with a man with motor neurone disease, Peter Smedley. He was present when Smedley died.

In 2010 he floated the idea of euthanasia tribunals to assess whether people were eligible for “assisted death”.

The members of the tribunal would be acting for the good of society as well as that of the applicant – horrible word – to ensure they are of sound and informed mind, firm in their purpose, suffering from a life-threatening and incurable disease and not under the influence of a third party. 

However, in the end, Sir Terry did not take his own life. BBC News correspondent Nick Higham said: "I was told by the publishers his death was entirely natural and unassisted, even though he had said in the past he wanted to go at a time of his own choosing."



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March
14
 

Ebola’s wake-up call

Is there a silver lining to the Ebola epidemic in West Africa which has claimed nearly 10,000 lives over the past year?

Yes, says A. Townsend Peterson, of the University of Kansas, in the journal PLoS Neglected Tropical Diseases. Finally, he argues, Ebola will get the funding needed to develop effective vaccines and treatments.

Ebola is only one of a number of diseases which cripple developing countries, but which are ignored in the developed world because no one there is in danger. But as soon as governments realised that Ebola could easily spread from West Africa to anywhere in the world, the funding tap was opened.

One example of this dynamic is the West Nile virus, which has become endemic in the US. Between 1942 and 1998, 278 articles dealt with it in scholarly journals. After it arrived in 1999, the number of publications has averaged 420 a year. Scientific interest in Ebola is following a similar pattern.

If the present situation with Ebola is to offer any lessons, they are that the only hope for serious investment in reducing the incidence and impact of such diseases is via spread to developed countries. Once such spread occurs, research and pharmaceutical investment will most likely follow. Ebola is a positive example, and clearly Ebola research will enter a new phase of progress, innovation, funding, production of key pharmaceuticals, and improved care, hopefully for all who might be infected by this virus.

In effect, what Ebola did was to cross the line between being a “neglected tropical disease” and being an “emerging infection.” The former set of diseases collectively exert an enormous burden in the developing world that may be constant or episodic, but are rather ubiquitous in those regions, affecting the affluent only when they venture into those regions. The latter, on the other hand, are much less predictable, but garner more immediate attention on the world scene, precisely because they may affect affluent countries. How many other neglected diseases must await this process of spread to affluent regions and infection of affluent people, making the transition from neglected tropical disease to emerging infection, before they also will see investment and innovation?

Perhaps this is part of the good news about globalization: rich countries will realize that no man is an island and begin to make sures for Chagas disease, human African trypanosomiasis, the leishmaniases, echinococcosis, lymphatic filariasis, onchocerciasis, schistosomiasis, Buruli ulcer, Lujo virus and many other neglected disease a far higher priority.  



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March
13
 

Nitschke’s campaign for re-registration falters

Australian euthanasia activist Philip Nitschke is sailing against the wind in his campaign to regain registration as a medical doctor. The Northern Territory branch of the Australian Medical Association expelled him this week for not living up to its code of ethics and his barrister has passed away suddenly.

Nitschke ridiculed the AMA’s decision.

"They had to act, they had to make their little decision to throw me out and now they're claiming I don't meet their 'high standards'. It's something of a joke. I don't like the way the medical boards behaved either, if they cannot come to terms with something like rational suicide. The world is changing and it is about time the medical profession caught up."

But the death of Peter Nugent, a personal friend and assisted suicide supporter who had taken on his case on a pro bono basis, was a blow. Mr Nugent had end-stage cancer but was responding well to chemotherapy and was looking forward to challenging his client’s suspension by the Medical Board of Australia, which was subsequently upheld by the Northern Territory Health Professional Review Tribunal.

During his suspension, Nitschke has been exploring a new career direction as a stand-up comedian. He is currently in the UK rehearsing for a show at the Edinburgh Fringe Festival. Its provisional name is “Dying Laughing”. "I've never done comedy before but let's face it, you don't have to spend too long in Darwin in the medical professional to have a wealth of material," he says.



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March
12
 

Interview: Francoise Baylis on the ethics of social egg freezing

Professor Françoise Baylis is Canada Research Chair in Bioethics and Philosophy at Dalhousie University. She recently urged women not to freeze their eggs in order to focus on a career. BioEdge asked her to expand upon her advice. 

* * * * * 

Xavier Symons: Egg freezing is supposed to allow women to ‘have it all’: they can freeze their eggs at a fertile age, and ‘come back’ to childbearing after a successful career. What’s misleading about this picture?

Françoise Baylis: Media commentary on social egg freezing describes egg freezing in anticipation of age-related fertility decline as a “reproductive backstop,” a “fertility insurance policy,” an “egg savings account,” a way to “rewind the biological clock,” an “anti-aging technology”, and so on.  It would be polite to call these types of descriptions “misleading.”

Egg freezing is being sold to women as a guarantee of future fertility. Does science support this?   

According to the American Society for Reproductive Medicine (ASRM): “Even in younger women (i.e., <38-years-old), the chance that one frozen egg will yield a baby in the future is around 2-12%.” [1] This hardly counts as a “guarantee of future fertility.”  Moreover, it is worth noting that research published in 2011 reports that the average age in the US for egg freezing is 37.4-years-old. [2] It is very likely that these women are looking at less than a 2-12% live birth rate.

What do you think are the social issues that are driving women to avail themselves of egg freezing services?

The media reports on women having to choose between a career and a family.  At least one study, however, suggests a more complicated picture which supports my view that what we have here is a social problem that requires a social response, not a technological “fix”. According to Hodes-Wertz and colleagues, the vast majority of women (88%) do not pursue childbearing earlier because they lack a partner. Only 24% of women identified professional reasons for not pursuing earlier childbearing [3].  The question we need to focus on is why is it that successful, professional women lack partners?

Facebook and Apple have offered their female employees financial help for egg-freezing fertility treatment. Is this an advance for women?  

Facebook and Apple want to keep their young women at work producing for the company.  They have no vested interest in having them reproduce for themselves.  A true advancement of both women’s and men’s interests would have these powerful companies adopt family friendly work policies such one-year parental leave following the birth of a child or the legal adoption of a child, on-site subsidized daycare, flexible work arrangements (including diminished travel responsibilities and job sharing) and support for re-entry into the workforce. [4] [5]

References:

[1] http://www.sart.org/uploadedFiles/ASRM_Content/Resources/Patient_Resources/Fact_Sheets_a nd_Info_Booklets/ Can_I_freeze_my_eggs_to_use_later_if_Im_not_sick-FINAL_8-13-14.pdf

[2]  http://www.fertstert.org/article/S0015-0282%2811%2901693-1/pdf

[3] Hodes-Wertz B, Druckenmiller S, Smith M, Noyes N.  “What do reproductive-age women who undergo oocyte cryopreservation think about the process as a means to preserve fertility? Fertil and Steril 2013 100(5): 1343-9.

[4] Baylis F. Left out in the cold: Seven reasons not to freeze your eggs. Impact Ethics. 2014 
http://impactethics.ca/2014/10/16/left-out-in-the-cold-seven-reasons-not-to-freeze-your-eggs/

[5] Baylis, F. Left out in the Cold: Arguments against non-medical oocyte cryopreservation. Journal of Obstetrics and Gynaecology 2015;37(1):64-67.



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March
07
 

‘Canadian doctors don’t want to assist in suicide’—new survey

The majority of Canada’s palliative care specialists don’t want to participate in assisted suicide, according to a survey recently conducted by the country’s Society of Palliative Care Physicians (CSPCP). The survey – discussed in the latest edition of the Canadian Medical Association Journal – revealed that only 25% of CSPCP members would be open to helping patients end their lives.

75% of respondents said assisted suicide fell outside the perview of palliative care (even when one adopts the World Health Organization’s definition of palliative care).*

Although some palliative care doctors may choose to assist patients in ending their lives once that becomes legal, others believe that who should actually administer lethal doses of medication is still an open question. 

“There’s a huge misconception out there that that’s what palliative care is —it’s all about death”, remarked CSPCP president Dr. Susan McDonald. “No. The great majority of it is about life and living life as best as you possibly can”.

  “[Assisted suicide] It’s not part of our practice and we don’t anticipate it will become part of our practice,” says Dr. Doris Barwich, the Society’s past president and current executive director of the British Columbia Centre for Palliative Care.

In a landmark decision on the 6th of February, the Supreme Court of Canada ruled that prohibiting assisted suicide is unconstitutional and a violation of the country’s Charter of Rights and Freedoms. Various healthcare organisations and representative bodies are currently debating the practicalities of the new law. 

*Subsequent to the publication of this story on the 7th of March, the CMAJ have made a correction to their original article. The CSPCP study found that not 56% but rather 75% of respondents didn't think they should provide assisted suicide or euthanasia. The CMAJ had originally reported 56%.



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March
07
 

Indonesian executions spark death penalty debate

Bali Nine drug smugglers Andrew Chan and Myuran Sukumaran    

A number of botched executions in the US have helped revive the debate over the death penalty. But the discussion isn’t confined to the US alone. Across the Pacific, Indonesia has come under intense scrutiny for its decision to execute two Australian nationals convicted of drug smuggling.

The two men – ringleaders of a group known as the Bali 9 – were sentenced to death by an Indonesian court in 2009. On Friday they were transported to an execution facility on the Indonesia Island of Nusakambangan in central Java.

The case has drawn attention to what some have described as the ‘cruel’ and ‘inhumane’ method of execution used in Indonesia – a firing squad. Indonesian police follow a precise procedure. Prisoners are dressed in white with an x marked on their heart, and then taken to a field, where they are tied to a black cross or post. 

Twelve guards line up to shoot the prisoners, but only three have loaded bullets. On a command of the leader of the firing squad – “do it” – the guards fire. Prisoners have been known to take up to ten minutes to die after being shot.

Australian Foreign Minister Julie Bishop has labelled the punishment a “disproportionate use of force” and a “cruel and degrading treatment”. Australian Prime-Minister Tony Abbott expressed similar sentiments: “We deplore the death penalty, we deplore drug crime, but we deplore the death penalty, particularly for people who have been so thoroughly rehabilitated.”

It is, however, unlikely that the Indonesian government will grant clemency to the men. Indonesian Prime-Minister Joko Widodo has expressed his resolve to send a “tough message” to drug smugglers. 75% of Indonesians support the death penalty as a punishment for drug related offences. 



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March
07
 

British mum becomes surrogate for son’s baby

Anne-Marie and Kyle Casson   

This week’s story from Britain wins the New Frontiers Award in Assisted Reproductive Technology hands down.

Twenty-four-year-old Kyle Casson, a supermarket worker, was gay but was desperate to have a child. One of his relatives volunteered to be a surrogate, but when she pulled out for medical reasons, Kyle’s mother stepped forward.

So Kyle shopped around for a donor with the right hair and eye colour and organised fertilisation and implantation at an IVF clinic.

Eight months ago 46-year-old Anne-Marie Casson  gave birth to Miles by C-section.

It is believed to be the first time that a single man has had a baby through surrogacy in the UK.

The relationships of the three people are tangled, to say the least. Anne-Marie is the mother of Kyle, and both the mother and the grandmother of Miles. Miles is both the half-brother and the son of Kyle. Kyle is both the son and the “husband” of Anne-Marie.

The ethical complexities do not trouble Kyle. He told the Daily Mail:

“I understand that not everyone will agree with it, but they can have their opinions. I have a son and I am very happy. As long as people can provide a home, and they have the support, I don’t see why anyone should be denied the right to be a parent. Regardless of sexuality, gender, as long as you can provide for the child, I don’t see what the problem is. I paid for it myself, it’s not taxpayers’ money, I own my own home, I am going back to work.”

The case was legally tangled as well. Under English law, Anne-Marie and her husband are the legal parents. Kyle had to apply for an adoption, but normally a surrogate mother must hand over the child to two parents.

However Mrs Justice Theis ruled that the child would be properly cared for and that the adoption could go ahead. She observed that the arrangement was “unusual” but “entirely legal”. She was particularly impressed by the fact that Kyle had given his decision careful consideration.  “The court’s paramount consideration is (the little boy’s) lifelong welfare,” she said. “What is apparent from the reports is that the parties thought carefully about this arrangement, pausing, reflecting and seeking advice at each stage.”

Despite the unconventional relationships, Anne-Marie was still conservative about some details. She wanted a C-section rather than a vaginal birth for a perfectly conventional reason: “He is my son, I love my son, but there are certain things that he can’t and should not see.” 



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March
07
 

Irish IVF industry slams donor disclosure proposals

Proposed legislation in Ireland which would ban anonymous donation of eggs and sperm has come under fire from the IVF industry. In a hard-hitting op-ed in the Irish Times, Dr John Waterstone, vice president of the Irish Fertility Society, has called upon the Oireachtas (parliament) to scupper the assisted reproduction regulations of the Children and Family Relationships Bill.

“The proposed piecemeal assisted reproduction legislation [he says] is unacceptably proscriptive. The register it proposes represents an intolerable intrusion into the lives of subfertile couples and stigmatises them and their children.”

Furthermore, IVF clinics would lose business as prospective clients would seek treatment in countries like Spain, the Czech Republic and the United States which offer the option of donor anonymity.

When Justice Minister Frances Fitzgerald introduced the new proposals which would require clinics and hospitals to provide details of donors and children to a national donor-conceived person register, her focus was the welfare of the child. “The key issue is to enable a child to know his or her identity. As a result anonymous donation will be prohibited.”

Obviously the ways that the government and the IVF industry see the issue are completely different. While the government’s focus is the right of a child to know his or her genetic heritage, Dr Waterstone frames the question simply as a matter of parental options in making a commercial transaction. The parents’ rights trump the child’s rights:

“The belief that a donor-conceived child has a right to identify and meet the donor, which supersedes the rights of the parents to autonomy and privacy, is obviously arbitrary … I am neither for nor against donor anonymity because both positions are acceptable. I am totally opposed to the State intervening in decisions about donor anonymity. Both donors and recipients should be allowed opt for either anonymous or identifiable donation. In short, I am for choice.”

 



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March
07
 

IVF births in US hit 1.5%

More than 1.5% of the babies born in the United States in 2013 were IVF babies, according to the latest statistics from the Society for Assisted Reproductive Technology.

In that year, 380 clinics reported on 174,962 IVF cycles resulting in the birth of 63,286 babies, up from 165,172 cycles and 61,740 babies born in 2012.

Most strikingly, more women, no matter their age, chose to have a single embryo transferred. The increasing popularity of this choice was greatest in the youngest age group, women under 35, with 22.5% of those patients choosing the single embryo option in 2013, up from 14.8% in 2012. For older women, the average number of embryos transferred was about 50% higher – at least 2.7 embryos.

While the number of total IVF cycles performed and the total number of babies born as a result went up, the number of twin births resulting from IVF declined from 12,436 in 2012 to 12,085; triplet were down to 376  from 411 in 2012.

The figures also show how difficult it is for women over 40 to conceive with IVF. For under-35s, the percentage of transfers resulting in live births was, according to the SART statistics, 47.7%. But for women aged 41 and 42, it was only 16.3% and for women over 42, only 7.3%. 



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March
07
 

Peter Singer to release new book on altruism

A new book by utilitarian philosopher and bioethicist Peter Singer will be released in April. “Doing the Most Good” (Yale University Press) is a defence of what he describes as “effective altruism”. Here’s a preview of some of its key ideas from a blog at TED Talks, where Singer gave a popular presentation in 2013.

What it is: “For a lot of people, altruism is simply the idea of doing good. Those people are happy if they’ve donated to some cause that they think is good and it gives them a nice, warm glow. Effective altruists want to do more than that—they want to make sure they get the best value for what they’re doing … An effective altruist uses his or her capacities to reason, gather evidence, and analyze data to ensure he or she makes the most of available resources.”

The basic insight: “This is the website of the Bill & Melinda Gates Foundation, and if you look at the words on the top right-hand side, it says, ‘All lives have equal value.’ That's the understanding, the rational understanding of our situation in the world that has led to these people being the most effective altruists in history, Bill and Melinda Gates and Warren Buffett.” (TED talk.)

Who are the most effective altruists? “Effective altruism is very well-suited to Silicon Valley—these are people who are quantitative types, good with data, they understand the point of making a difference, and they have the opportunity to do it … Look at somebody like Bill Gates, who took quite a while to commit himself to effective altruism, but is now fully committed. I hope that many of the younger billionaires in Silicon Valley will be making the same sort of commitment very soon.”



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March
07
 

Doctors under the black flag of the Islamic State

Looking for dramatic examples of dilemmas in medical ethics? Try being a doctor in territory ruled by the Islamic State. In a disturbing blog post, bioethicist Craig Klugman has sifted through media reports and found many examples of how difficult it can be to work as a doctor or nurse in the occupied city of Mosul or other centres.

* “In some reports, hospitals and health care practitioners are being targeted for death, abduction, and arrest. ISIS has declared that physicians who do not report to work will have their property seized and be exiled. Physician autonomy on whom to treat and on whom to use limited resources has been removed. There are reports of medication and blood being taken by soldiers to be used on their own and not on civilians or other patients, no matter their medical need.”

* Some doctors have refused to treat ISIS wounded. One report said that ten doctors at a hospital in Mosul had been executed for refusing to treat. The scant details suggested that ISIS had forced regular patients out to make room for its own wounded.

Klugman points out the agonising dilemma faced by these doctors. “On the one hand, this resistance can be viewed as bravery and courage—not lending assistance to a regime with which they do not only philosophically disagree but that has also demonstrated a lack of respect for human life. … On the other hand, patients are vulnerable and are people in need. If a physician can help someone in need, is there not an obligation to do so? Did these physicians abandon patients because of a political disagreement?”

* The government of Iraq has alleged that ISIS is trafficking in organs and that a dozen doctors had been executed for refusing to cooperate. Klugman points out that collaborating in organ transplants under these circumstances could be viewed as a war crime. “The tough question is whether a physician is required to sacrifice his or her life in order to not commit an unethical act. If the physician’s family or self is threatened with death for not participating, should that ultimate price be paid?” 

* Medicine under ISIS is strictly segregated by sex. Male doctors are not allowed to touch female patients, nor female doctors male patients. Women doctors are not allowed to work at night, so sometimes women in labour go unattended.

Should the standards of Western bioethics be imposed upon the doctors serving the Islamic State? Perhaps, Klugman suggests, the standards are not so different. He quotes a 9th century philosopher-physician Muhammad ibn Zakariya al-Razi: “The doctor’s aim is to do good, even to our enemies, so much more to our friends, and my profession forbids us to do harm to our kindred, as it is instituted for the benefit and welfare of the human race, and God imposed on physicians the oath not to compose mortiferous remedies.”



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March
07
 

Ebola threat fades in West Africa

Beatrice Yordoldo with Chinese health workers   

Fears of a public health catastrophe are fading in West Africa after the last known Ebola patient in Liberia was discharged from hospital. At the same time, however, new outbreaks are being reported in neighbouring Sierra Leone and Guinea.

As of Thursday, no new cases had been reported in Liberia for 13 days, although there could easily be some in remote areas. Authorities are still tracking about 100 people who may have been exposed to the virus.

According to the World Health Organization, there have been over 23,900 reported confirmed, probable, and suspected cases of Ebola in Guinea, Liberia and Sierra Leone, with over 9,800 reported deaths. Liberia has suffered the highest number of fatalities, 4,117. About 860 health workers have been infected in these three coutries, with nearly 500 deaths.

The last patient to be discharged in Liberia was English teacher Beatrice Yardolo, 58. She had been infected by her son, a health worker, and was treated at a clinic run by Chinese doctors. She lost two sons and a daughter to the disease. “I feel fine to be back home with my family after being away for almost three weeks — I feel very proud,” Ms. Yardolo told the New York Times in a telephone interview. “I’m very grateful to God because he does everything.”

Ebola is still mysterious. Health workers have noticed that the death rate is falling but they do not know why. In the remaining Ebola clinics run by Médecins Sans Frontières (Doctors Without Borders), the death rate has dropped from 62% to 52%. Two possibilities were mooted in a New York Times report: Liberians were becoming more careful about hygiene or the virus has mutated to become less dangerous.

Only a couple of months ago, there were fears of a collapse of civil society in West Africa because of the epidemic. Was the world over-reacting? As the London Telegraph points out, “with nearly 10,000 deaths, and nearly 24,000 confirmed and suspected cases, that is a hard case to make. Besides, which headline is better? 'Apocalyptic predictions prove wrong'? Or 'Apocalyptic predictions prove right'?” 



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March
07
 

That eminent utilitarian Mr Spock

Peter Singer is often described as the most influential philosopher alive. (This tag, along with “most controversial” and “most dangerous”, derives from a profile in The New Yorker by Michael Specter after he accepted a chair at Princeton University.) But is he the most influential utilitarian alive?

Perhaps so. But only because Leonard Nimoy, aka Mr Spock, passed away this week. It certainly could be argued that the pointy-eared half-Vulcan, half-human was at least the best-known utilitarian. His spirit lives on in the TV series and several movies, notably Star Trek II: The Wrath of Khan. In the concluding scene, the warp drive of USS Starship Enterprise has been damaged. Braving lethal doses of radiation, Spock enters the engine room, and restores power. In his dying moments, he speaks to Kirk through the glass doors. It's a classic statement of the fundamental utilitarian principle. 

Spock: Don't grieve, Admiral. It's logical. The needs of the many outweigh . . .

Kirk: -- the needs of the few . . .

Spock: -- or the one…  [He kneels.] I have been . . . and always shall be . . . your friend. [He places his hand on the chamber glass, and his voice is a whispered broken husk.] Live long and prosper!

Kirk: [places his hand against the glass as Spock slumps and dies] No. . . .



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February
28
 

More research needed on the Pill-brain nexus

If there is one request by patients which is universally spurned by doctors, without fear of being labelled paternalistic, it for steroids as performance-enhancing drugs. Extensive research confirms that anabolic steroids damage the liver and the heart, among other problems.  

If widespread steroid use is discouraged for men, why haven’t the neurological effects of the steroid-based contraceptive pill on women been studied as thoroughly? In a challenging article in the open source journal Frontiers in Neuroscience, three Austrian researchers argue that 50 years after its introduction, it is time to study what the pill does to the brain.

“Changes in brain structure and chemistry cause changes in cognition, emotion and personality and consequently in observable behaviors. If a majority of women use hormonal contraception, such behavioral changes could cause a shift in society dynamics. Since the pill is the major tool for population control, it is time to find out what it does to our brain…
“As the number of women using oral contraceptives constantly increases, while the age of first contraceptive use constantly decreases down to sensitive neuroplastic periods during puberty, the associated changes in personality and social behavior imply significant consequences for society.”

The article does not scaremonger, but simply sets out the state of current research and points out that there are significant gaps. 



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February
28
 

Does religion have a role in bioethics?

The notion that religious convictions have no place in medicine or bioethics is widespread and growing. After the Canadian Supreme Court recently found that euthanasia and assisted suicide are constitutional, for instance, there were immediate suggestions that doctors who refused to assist on religious grounds might have to find other employment.

Writing in the Journal of Medical Ethics, Oxford theologian Nigel Biggar argues that this is wrong. First, because it assumes that only secularity is rational. “The ideal of secular medicine as a realm of reason and therefore as untroubled by deep metaphysical and moral disagreements is a fantasy,” he says.

Second, because religion itself, or at least the Christianity which he professes, is not irrational. Respecting other beliefs, it seeks to persuade with rational arguments.

“Positively, if I, a religious believer, am going to succeed in persuading you, an agnostic or atheist or different kind of religious believer, of my moral view, then I will have to show you that your view has weaknesses or problems, that these cannot be adequately repaired in your terms, but that they can be repaired in mine.”

Does Christianity add anything to bioethical discourse? Surprisingly, perhaps for some critics of Christianity in the public square, Biggar says that its first contribution is good manners. Respect for human dignity and love for the truth, both characteristically Christian, support a style of dialogue which is even-tempered, respectful and inquiring.

More importantly, though, its distinctive views of the fatherhood of God and the Incarnation give rise to convictions which underpin much of contemporary bioethics. “One general instance of such content is a high, humanist view of human dignity, which is not an inevitable part of the cosmic furniture and which we cannot afford to take for granted. Other, more specific instances are the notions that individual autonomy is properly bounded by social obligation and a special sensitivity to the plight of the poorer and weaker.”

Stuff and nonsense, fumed Brian D. Earp, an Oxford researcher and an incoming Associate Editor at the JME. Good manners and respectful conversation are the hallmark of philosophy, not religion, and there is no God the Father to ground respect for other humans. And what about Savita*, the woman who died in Ireland because she was denied an abortion on religious grounds? “Some people will feel a shiver go down their spines—and not only the non-religious” at talk of religion having a role in medicine.

* This does not appear to be true. A 2014 inquiry by Ireland’s Health Information and Quality Authority showed that Savita’s death had nothing to do with the abortion law. It was caused by incompetence.



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February
28
 

Getting ahead in life

Head transplants are a familiar theme in B-grade sci fi films which lends itself to an infinitude of excruciating puns. But according to an Italian scientist, it could happen within two years. Sergio Canavero of the Turin Advanced Neuromodulation Group want to use the technique to help people with degenerative diseases like ALS or whose bodies are riddled with cancer. He told New Scientist “the major hurdles, such as fusing the spinal cord and preventing the body's immune system from rejecting the head, are surmountable, and the surgery could be ready as early as 2017.”

Other scientists are sceptical. “"I don't believe it will ever work, there are too many problems with the procedure,” one neurosurgeon told NS. However, Dr Canavero plans to present his ideas at the annual conference of the American Academy of Neurological and Orthopaedic Surgeons (AANOS) in Annapolis, Maryland, in June.

The project presents both philosophical and bioethical conundrums. First of all, since the higher cognitive functions which are commonly thought to be “us” take place in the head, it is more accurate to speak of a body transplant. Would people try to extend their life by transplanting their heads onto a younger or more beautiful body? Could it be the ultimate way to lose weight?

Where would the bodies come from? Deceased donors? Euthanased donors? Altruistic donors? And it might be hard to negotiate laws which assume that a decapitated person is a dead person. A transplant might be seen as murder. Even the  optimistic Dr Canavero believes that it would be a year before the patient is walking again. 

The problems are huge, but NS shares Canavero’s optimism. “Every advance in transplantation has seemed outlandish at first, from hearts to hands to faces, but in each case, doubts have given way to appreciation.”

In fact, there have been some promising results from work on mice. According to NS, “ Xiao-Ping Ren of Harbin Medical University in China recently showed that it is possible to perform a basic head transplant in a mouse (CNS Neuroscience & Therapeutics). Ren will attempt to replicate Canavero's protocol in the next few months in mice, and monkeys.” 



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February
28
 

The Ice Age cometh

Cryonics – or preserving the body or brain by freezing them for resuscitation in a more technologically advanced age --  is generally regarded as science fiction. However, it is a small industry in the US, where an Arizona company, Alcor, has cryo-preserved about 80 people and 30 pets.

One bioethicist has offered a thoughtful defense of the procedure, arguing “that the potential value that it might help realize is very big” and that “there is a non-negligible, even if small, chance for success”.

In a new Journal of Medical Ethics article, ‘The case for cryonics’, University of Oslo philosopher Ole Martin Moen argues that cryonics has been unfairly dismissed as a scientific flight of fancy.

Moen argues that the technology, though perhaps still many decades away, will in principle be available to us eventually. Considering the huge potential it holds, we should invest more resources in the field. He observes:

“reviving cryopreserved persons, though it cannot be done today, does not require the development of radically new technologies; it requires further refinement and convergence of technologies that already exist.”

Moen discusses the various technological precedents that exist in current science, such as the routine freezing and thawing of human sperm, eggs and tissues.

He is cautiously enthusiastic about the possibilities that cyronic revival would open up: 

“[We would have] a non-negligible opportunity to have a significantly longer life”.

At a more confident moment in his article Moen argues that we may have a rational imperative to opt for cryonic preservation:

“It is rational to opt for a small chance of survival when the alternative is no chance at all.”

Indeed, for most people it may sound like a flight of fancy. But by Moen’s cold logic this is something to take very seriously.  



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
28
 

Thailand outlaws foreign surrogacy

Thailand has passed a law to outlaw the use of Thai surrogates by foreign couples.

The law, passed by the ruling junta government last week, stipulates that foreigners will be prohibited from using Thai surrogates unless they have been married to a Thai national for at least three years. The violation of the law carries a prison sentence of up to ten years.  Agents for surrogate mothers also face lengthy prison sentences.

"This law aims to stop Thai women's wombs from becoming the world's womb. This law bans foreign couples from coming to Thailand to seek commercial surrogacy services," said Wanlop Tankananurak, a member of Thailand's National Legislative Assembly.

Thailand was rocked by several surrogacy scandals last year, including allegations that an Australian couple abandoned a baby boy with Down syndrome while taking his healthy twin sister.

Another case involved a Japanese man who fathered at least 15 babies using Thai surrogates in what local media called the "baby factory".

Critics of the new law say that making commercial surrogacy illegal could push the industry underground, making it harder for patients to access quality physicians and medical care.

But some are sceptical that the legislation will even be implemented. “Law enforcement in South East Asia is famously lax”, wrote BBC correspondent Jonathan Head.

Thailand's junta, known as the National Council for Peace and Order, disbanded the upper house Senate following a May coup and placed all law-making authority in the hands of an interim parliament hand-picked by the military rulers. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
28
 

Refugees: be vaccinated or be turned away

In the fight to end polio, the Pakistani government has for the past year made safe-haven for internally displaced persons (IDPs) conditional on receiving polio vaccinations.

The country’s ruling party, the Pakistan Muslim League, has made polio drops mandatory for anyone leaving the country’s tribal areas – the regions in which the worst polio outbreaks have occurred. Previous voluntary vaccination programs in these regions have failed to eradicate the polio threat.

As the stakes grow higher, the authorities have chosen to prioritize public health over individual consent. A significant number of refugees refuse the vaccine and are turned back at regional checkpoints. In June last year, for example, nearly 40 trucks carrying internally displaced persons (IDPs) from North Waziristan en route to Afghanistan were turned back by the Pakistan army at the Pakistan-Afghan border. The refugees demanded that they be first provided with food and shelter before the administration of the vaccine.

Refugees often believe Taliban authorities, who claim that vaccination is a ‘Western conspiracy’ and will ‘spoil’ (i.e. render infertile) their children. This is not an entirely unfounded claim. In 2011, the CIA used a hepatitis vaccination program as a front to gather intelligence on the whereabouts of Al Qaeda leader Osama bin Laden.

The new government policy has attracted the attention of Western bioethicists. In an article in this month’s edition of the Journal of Medical Ethics, Art Caplan and David L Curry of the NYU School of Medicine argue that states have a right and a responsibility to require vaccination in instances where serious vaccine-preventable diseases threaten local populations.

“Aid can morally be made contingent on vaccination when there is direct, imminent risk to aid givers and nations from whom aid is being sought.”

Surprisingly, Caplan and Curry do not mention the CIA incident that has provided such strong support for Taliban scaremongering. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
28
 

US states tying psychiatrists’ hands over guns

After eight people were shot to death this week in rural Missouri, the debate over psychiatrists’ confidentiality in treating people with mental illness has revived. Coincidentally, the American College of Physicians, seven other national health professional organizations, and the American Bar Association, made several recommendations this week about how to decrease deaths and injuries through guns.

One of them is to “oppose state and federal mandates that interfere with physician free speech and the patient-physician relationship, including physician ‘gag laws’ that forbid physicians to discuss a patient's gun ownership.”

The idea is that even mentally-ill persons have a constitutional right to bear firearms. Several states have passed laws guaranteeing this. Florida’s law, which was passed last year, specifies that “A health care practitioner …  may not discriminate against a patient based solely upon the patient’s exercise of the constitutional right to own and possess firearms or ammunition.” Missouri passed a similar law this year.

Another recommendation is to “oppose blanket reporting laws that require physicians to report patients with mental or substance use disorders, as these laws may stigmatize the patients and inhibit them from seeking treatment.”

"These laws go too far, Steven Weinberger, executive vice president of the American College of Physicians, told New Scientist. "Blanket mental health reporting laws can have unintended consequences," he says. Such laws can discourage people from seeking mental health care, he says. "They can create a tremendous disincentive for people to get the support they need."



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February
28
 

British mum in bid to give birth to child of dead daughter

A British woman has entered a court battle so that she can give birth via IVF to the child of her dead daughter.

The daughter passed away four years ago from bowel cancer, but not before having her eggs frozen.

The mother, 59, claims that the daughter asked her to bear her baby in the event that she succumbed to cancer. The mother and her husband are now fighting to receive IVF treatment using the girl’s eggs. They claim that in receiving the treatment they will be honouring their daughter’s dying wishes.

Importantly, the objection made by the British authorities is not a matter of deep moral principles, but rather a question about whether the daughter had given express consent to the use of her eggs.

No UK-based clinic has agreed to treat the mother, so the couple have applied to export the eggs to New York – a clinic there have agreed to provide the fertility treatment at an estimated cost of up to £60,000.

The Human Fertility and Embryology Authority (HFEA) refused the couple’s application to export their daughter’s frozen eggs to America, on the grounds that she did not give clear written consent.

The deceased woman completed a form that gave consent for the eggs to be stored for use after her death, but crucially, failed to fill in a separate form that indicated how she wished the eggs to be used. This technically meant her consent became invalid.

They couple have appealed to the High Court. The case will be heard in the Administrative Court (a division of the High Court) at a date to be set.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
21
 

Colombia may finally legalise euthanasia

The assisted suicide of American woman Brittany Maynard on November 1 may have tipped Colombia into legalising euthanasia.

Euthanasia has been in legal limbo in the South American nation since a decision by its Constitutional Court in 1997 that “mercy killing” was constitutional and that doctors who cooperated should not be prosecuted. It urged the government to pass a law to regulate the procedure. The government did nothing. Even sympathetic doctors were afraid to test the law and refused to have anything to do with euthanasia.

However, the issue continued to simmer away. One notorious doctor, Gustavo Quintana, claims that he has killed 200 patients in Colombia and abroad.

Apparently the death of Ms Maynard in Oregon has given new life to the issue, according to the PanAm Post. In November Senator Armando Benedetti, who has introduced three euthanasia bills in the Colombian Congress, tried for a fourth time.

And earlier this week the Constitutional Court set a deadline for the Ministry of Health. It has 30 days to implement euthanasia protocols for doctors. Health agencies are supposed to set up committees to advise patients and their families about how to keep people who are depressed from requesting euthanasia.

The Court said that “without clear rules and precise procedures, doctors do not know exactly when they are committing a crime and when they are contributing to the realization of a fundamental right.”



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February
21
 

Professionalise surrogacy, say New Zealand academics

Two New Zealand academics have proposed that surrogacy become a profession like nursing or teaching which is fully integrated into the health system. Writing in the journal Bioethics, Ruth Walker  and Liezl van Zyl, of the University of Waikato, contend that both commercial and altruistic surrogacy have so many potential moral, legal and emotional complications that a complete change in the framework is needed.

Their discussion centres on decisions about whether to abort a surrogate mother’s foetus if there is a substantial abnornamlity. It would be unethical for commissioning parents to request abortion for a minor abnormality like a cleft palate, but in cases of severe abnormality, “abortion would be the morally responsible thing to do”.

Often, however, the intending parents and the surrogate mother quarrel over the fate of the baby. In a commercial model, parents often demand that the baby be aborted, which treats the surrogate as a mere vessel and denies her right to bodily  integrity. In an altruistic model, the intending parents can just walk away if there are problems, leaving the mother with the baby or the decision whether to abort.

What the authors proposed is the creation of a professional cadre of registered surrogates working within a government instrumentality, with set fees and civil servants who can support the mother and parents if there are difficulties. “The professional model emphasizes the ethical dimension of surrogacy,” they believe.

“ … payment should not be tied to the delivery of a healthy infant. Although many critics of commercial surrogacy claim that it is the payment itself that is pernicious, we argue that the flaw lies in the way payment is managed. For example, in cases where the surrogate agrees to an abortion she should still receive full payment so that she is not penalized for doing the right thing. The intended parents are not buying a baby but (committed) service, which may include an abortion. Her financial situation should not be a factor in her decision whether to have an abortion.
"Further, in the professional model the intended parents would be the legal parents from the moment the baby is born. This ensures certainty for both parties, and best serves the needs and interests of the child. The intended parents should not be able to abandon the baby any more than the surrogate should be able to withhold it from them."


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February
21
 

Paternity presumption threatens same-sex marriage

 

Sheena and Tiara Yates   

Despite the advance of same-sex marriage in the US, it may be some time before the law is scrubbed clean of the presumption that a male/female relationship constitutes a family.

A legally-married lesbian couple in New Jersey, Sheena and Tiara Yates, are fighting requests for visitation rights from their two children’s biological fathers.

Both men had signed written agreements that they would not interfere at all in raising the children. But after the births, they reneged. Unfortunately for the couple, New Jersey supports the presumption of paternity by the biological fathers. It does allow the extinction of paternal rights, but only if the sperm donation is performed under the supervision of a doctor. The agreements made by the women, however, were informal and thus unenforceable.

"Emotionally it's very hard for us," Sheena Yates told the media. "All we want is a family, and we can't have kids without an outside party. It's a lot for us to have to deal with. It's not just hard on us, it's hard on the kids, too."

The couple’s lawyers complain that poor and disadvantaged couples like his clients cannot afford the expensive services of sperm banks and IVF clinics which the law demands. "The way the law is structured is most protective of people who have the money to buy from a cryo-bank or have the insurance to cover fertility treatment. The courts want this to be a relatively hands-off transaction," says Kimberly Mutcherson, of Rutgers-Camden University. "There are pockets of people that are negatively impacted."

A case in Kansas raises similar issues. A lesbian couple, Jennifer Schreiner and Angela Bauer, who were already co-parenting 8 foster and adopted children, wanted a child of their own. After answering an ad in Craigs List William Marotta provided sperm and agreed to have nothing to do with raising the child. Ms Schreiner gave birth to a daughter in 2009.

This time the state of Kansas, not the sperm donor dad, intervened. Authorities wanted to declare Mr Marotta the father so that he would pay child support. As in New Jersey, there is a presumption of paternity overriding any private agreement if insemination takes place at home. As the years went on, the child’s life must have become more complicated. Her mommies have split up and her birth mother married a man and is now called Jennifer Coop. Her time is split between the two women. 



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February
21
 

Disgraced researcher Hwang Woo-suk teams up with US scientist

One of the world’s leading stem cell scientists has entered a partnership with the disgraced Korean researcher Hwang Woo-suk to pursue cloning research in China, Science reports.

Shoukhrat Mitalipov, of the Oregon Health & Science University in Portland, was the first to successfully derive stem cells from a cloned human embryo in 2013. A South Korean newspaper, Dong-A Ilbo,  has revealed that he will be working with Hwang on both animal and human cloning.

Hwang came undone in 2006 after it was discovered that two papers he had published claiming that he had created human embryonic stem cells were bogus. He was convicted of fraud and bioethics violations but received a suspended sentence. For many Koreans, he is still a hero.

Mitalipov's "strength is in primate stem cells,” Hwang told the newspaper. “My specialty is in cell nuclear transplantation. So we've agreed that if we combine his strength with mine, we can create a breakthrough outcome in curing maternal line genetic disease, on which he is now focusing."

Providing US$93 million for their project will be the Boyalife Group of Wuxi, China. Hwang says the laboratories will be sited there because the bioethics laws in Korea are prohibitively strict. 



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February
21
 

Should we rethink our rescue intuitions?

The rescue instinct is a principle deeply set in our psyche – when we encounter someone whose life is at immediate risk we feel an obligation to rescue them. No normal person would stand by as a child drowns in a pool, for example.

But how analogous is this situation to various vexed situations in clinical practice? And what do we do when we have only limited healthcare resources to allocate?

A new article in the American Journal of Bioethics argues that we are often led astray by the ‘rescue instinct’, and that our allocation of healthcare resources needs to be revised in light of other equally important considerations. 

Nancy S. Jecker of the University of Washington School of Medicine believes we are often misled by our rescue intuitions.

Jecker premises her article ‘Rethinking Rescue Medicine’ on a social observation:

“Although society invests in rescuing needy patients, it also rejects giving full priority to rescue, because the opportunity cost of doing so would be too great.”

The question she poses is ‘How much is too much?’ How many resources should we allocate to rescue care as opposed to, for example, preventative measures?

Jecker takes aim at the U.S. Congress’s decision to ‘rescue’ patients with end-stage renal disease (ESRD) by funding all care for individuals with this condition:

“According to the U.S. Renal Data System Annual Data Report, the total costs of ESRD in 2011 was $45.5 billion, and it represented 18% of total Medicare expenditures (U.S. Renal Data System 2013). The deeper problem is that this uneasiness about enforcing limits has been not just irrational, but unjust. It has deterred us from allocating health care fairly.”

She also targets doctors guilty of overtreating patients (which she defines as “[performing procedures that] do not have a reasonable chance of helping the patient”).

Jeker wonders what if any ethical justification there is for prioritizing rescue over preventative care. On her account, we have a psychological bias towards the real lives involved rescue over the hypothetical lives envisioned when devising preventive care schemes.

Jecker advocates greater focus on ‘upstream factors’ such as social conditions that put people at greater risk of developing a life threatening disease. 

It is hard to see how this new paradigm could play out in practice: Preventative measures are important, but we also feel a countervailing moral imperative to attend to those in ‘real’ risk. Perhaps this imperative is too strong to dismiss. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
21
 

The bioethics of precision medicine

The idea of ‘precision medicine’ has become the subject of much discussion, following US President Barak Obama’s 2015 State of the Union address. In his speech, President Obama promised to invest $215 million in a ground-breaking ‘precision medicine’ initiative, with the short-term aim of running drug trials for targeted cancer treatments.

Precision medicine sounds great in theory – it gives clinicians tools to identify the specific molecular/genetic profile underlying a patient’s health, disease, or condition, and thus offer more effective, targeted treatments.

But are there any attendant bioethical concerns?

De Paul University bioethicist Craig Klugeman has raised questions about privacy controls on genetic information:

“Privacy is the main bioethical issue raised by the framers of this initiative. Given the record of companies and institutions with maintaining online privacy, I’m not sure we should yet be confident that privacy could be assured. And then consider that health information will be collected via mobile devices and transmitted wirelessly presenting additional opportunities for privacy breaches.”

A similar concern has been raised by the Duke Center for Personalised and Precision Medicine. As the center’s website points out, studies of publically-available sequence data have shown that patients in research studies can be identified by their genome sequences. 

There are also ethical concerns about the release of incidental findings. With such a massive increase in the amount of genetic information being collected – Obama’s program envisages a genetic database of over 1 million participants – ethical dilemmas involving significant incidental discoveries will be more common. Who should decide which findings get relayed back to patients?

As Klugeman points out, Obama’s precision medicine program may very well be “just an overpriced promise that comes to nothing”. But if it is indeed enacted, there could be a number of bioethical issues to attend to. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
21
 

Many Dutch doctors open to euthanasia for existential suffering

Around one in three Dutch doctors would be prepared to help someone with early dementia, mental illness, or who is ‘tired of living’ to die, reveals a small survey published online in the Journal of Medical Ethics.

In the Netherlands, euthanasia or assisted suicide for those whose suffering is psychiatric/psychological in nature is legally permissible, but it represents a fraction of the numbers of patients who are helped to die in this way.

And while there is no ‘right’ to euthanasia, the freedom of a doctor to refuse the request on personal grounds has been widely debated, following some well-publicised cases. 

In a bid to find out what Dutch doctors think of euthanasia and assisted suicide, the researchers canvassed the views of 2500 randomly targeted general practitioners (family doctors) and specialists in the fields of elderly care, cardiology, respiratory medicine, intensive care, neurology and internal medicine between October 2011 and June 2012.

The doctors were asked whether they had ever helped a patient with cancer, other physical disease, mental illness, early or advanced dementia, or someone without any severe physical ailments, but who was tired of living, to die. Those who had not done so were asked if they would even consider helping someone to die, and under what circumstances.

Four out of 10 would be prepared to help someone with early stage dementia to die, but only one in three would do this for someone with late stage dementia, even if that person had written an advance directive for euthanasia. 

Around one in four (27%) would be prepared to help someone tired of living to die if they had a severe medical condition. But fewer than one in five (18%) would do so in these circumstances if the person had no other medical grounds for suffering. 

In a linked blog, lead author Dr Eva Bolt of the EMGO Institute for Health and Care Research,

Amsterdam, The Netherlands, commented: “Each physician needs to form his or her own standpoint on euthanasia, based on legal boundaries and personal values.”

Dr. James A. Colbert of Brigham and Women's Hospital and Harvard Medical School, Boston, Massachusetts, said the survey results are "not that surprising."

Dr. Colbert suggested we focus our attention more on palliative care.

"A much more important issue to focus our attention on is: how do we make sure that all patients are comfortable and well cared for at the end of life? Palliative care is such an essential component of medical care, yet very few patients will see a palliative care practitioner. Studies have shown that patients with cancer who see a palliative care practitioner have better quality of life and in some cases even live longer than other cancer patients who are only treated by oncologists”. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
15
 

“My brother is the father of my son”

Here’s a Valentine’s Day story from the British press. “My brother is the 'father' of my son” is the headline over an article in the Telegraph about celebrity UK branding expert Mary Portas, aka Mary Queen of Shops. A lesbian, Ms Portas asked her brother to donate sperm to impregnate her spouse, Melanie Rickey. Their child, Horatio, was born two years ago.

Ms Portas told the London Times in a puff interview for her autobiography Shop Girl that with her brother’s help, she was able to have a genetic relationship with her son. Horatio calls Ms Portas 'Mama' and Ms Rickey 'Mummy'. Her brother is referred to as 'Daddy'.

IVF specialist Simon Fishel told the Times that sibling donations were becoming much more common, although usually a sister or mother would donate eggs to a sibling or daughter.

 “It would have been more unusual ten years ago. Now that kind of situation pops up once a month [at his clinics]. If they can go for a family donor, that will be preferable and then it would be to a known donor. There’s a very close relationship. You know where the genes are coming from. They are trying to keep it in the family.”

As usual in such stories, the family background is quite tangled. Ms Portas, 54, already has two children, a boy and a girl aged 18 and 21. She split up with her husband Graham Portas, a chemical engineer, in 2003. Her brother is 52 has no wish for family of his own but will soon be moving to Bermuda to be with his girlfriend.



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February
14
 

UK may cut welfare if you don’t diet

If you are a fat, unemployed Brit, a long Lent lies before you. Prime Minister David Cameron will announce today that people on sickness benefits because of obesity or alcohol or drug addiction could lose them if they do not follow doctor’s orders.

Mr Cameron has asked health expert Prof Dame Carol Black to study whether benefits should be withheld from those who refuse assistance. His prepared remarks say:

“Too many people are stuck on sickness benefits because of issues that could be addressed but instead are not. Some have drug or alcohol problems, but refuse treatment. In other cases, people have problems with their weight that could be addressed, but instead a life on benefits rather than work becomes the choice.
“It is not fair to ask hardworking taxpayers to fund the benefits of people who refuse to accept the support and treatment that could help them get back to a life of work. The next Conservative government is determined to make sure that the hardest to help get the support they need to get them back to a fulfilling life.”

 

The notion that the government should meddle with lifestyles is popular with cost-cutting bureaucrats but controversial among doctors and libertarians.

Mr Cameron’s present idea is the sharp end of the stick, but behavioural change through “nudging” has been on the government’s agenda for several years. The idea stems from the 2008 book Nudge: Improving Decisions About Health, Wealth, and Happiness, by US academics Richard Thaler and Cass Sunstein. Their theory is that personal freedom and paternalism are not mutually exclusive and that the state should act as a guiding hand, gently and inobtrusively “nudging” citizens to accept its policies.

It is clear that the health consequences of an epidemic of obesity – diabetes, heart disease, strokes and other chronic diseases -- will be a drain on Britain’s National Health Service. A 2007 report by the Nuffield Council on Bioethics on the ethics of public health suggested that the problem was too complex to be solved by making benefits conditional upon treatment.

It’s clear that after eight years of dithering and nudging, the Cameron government has decided to cut the Gordian knot. To rephrase the Biblical injunction, “this we commanded you, that if any would not diet, neither should he get the dole”.



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February
14
 

Euthanasia cases leap in Dutch clinic

A Dutch euthanasia clinic cautioned three times by authorities in the past year has experienced a massive leap in the number of patients requesting assistance in dying.

In 2014, the Levenseindekliniek in The Hague received 1035 requests for euthanasia, up from 749 in 2013.

Of the 1035, 232 people were actually given euthanasia (up by 98 from 2013). 

The organisation believes the remarkable increase to be the result of increased publicity.

Last year they received widespread media attention after being reprimanded by the Regional Euthanasia Review Committee (RTE) for failing to refer a patient to a psychiatrist before euthanasia. The patient, a 47-year-old mother of two, was suffering from severe tinnitus.

Most of the 232 people given euthanasia by the Levenseindekliniek last year were suffering from physical conditions such as MS, ALS or effects of a stroke. Slightly less than a quarter had cancer and 20 per cent suffered from an accumulation of old age complaints.

The clinic was originally set up in 2012 with the purpose of servicing patients unable to find a doctor to euthanize them.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
14
 

Healthcare in hard times: Ukraine

More than politics is at stake in negotiations over a ceasefire between Ukraine and separatist rebels – healthcare in the affected regions is in a dire state.  

According to an article in this month’s Lancet, health services in east Ukraine are running out of essential medicines and facing serious shortages of doctors.

There has been an exodus of healthcare professionals from the war-torn regions over recent months and according to WHO estimates some facilities are experiencing shortages as high as 70%.

But this is not the only concern – medical supplies, including life-saving medicines, have been interrupted or cut off entirely in the eastern regions of the country. There are concerns about the fate of people with HIV/AIDS and tuberculosis as supplies of vital medicines dry up. And hundreds of people on opioid substitution therapy (OST) have already had their treatment cut off because supplies of buprenorphine have run out and there is no way to get more into the region.

Aleksey Kvitkovskiy, a doctor in Luhansk, told The Lancet: “The situation with antiretrovirus drugs for HIV-positive people is close to catastrophic. It is the same with drugs to treat tuberculosis and with methadone for patients receiving OST.”

The WHO has asked for US $23 million to care for those in eastern Ukraine affected by the conflict.

But only an end to fighting and the restrictions imposed by both sides, which are hindering transport of medicines and supplies into the region, will allow some of the largest health problems to be dealt with.



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
14
 

Healthcare in hard times: Greece

As the Greek health system buckles under economic pressure, patients are taking desperate measures to ensure basic care. Many patients in general hospitals are renting illegal nurses to ensure ongoing attention.

The nurses, usually from eastern European countries, have little or no training, but they offer affordable rates and for many patients are the only option.

“Because of the crisis, the last three years, we see more and more illegal nurses,” said Mr. Anastasios Grigoropoulos, the chief executive of Evangelismos Hospital. 

One top official said he believed that half of the nursing care in Greece came from 18,000 illegal providers.

The nurses perform simple tasks like changing IVs, checking blood pressure and cleaning wounds.  

Sometimes hospital staff lack the jurisdiction to act without police intervention, and they too are aware of the harsh realities of the staff shortage. “You can’t do anything”, claims Grigoropoulos. 



This article is published by Xavier Symons and BioEdge.org under a Creative Commons licence. You may republish it or translate it free of charge with attribution for non-commercial purposes following these guidelines. If you teach at a university we ask that your department make a donation. Commercial media must contact us for permission and fees. Some articles on this site are published under different terms.

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February
14
 

Political inaction as minors work tobacco farms

Human rights groups have expressed grave concern about the employment of young children on tobacco farms around the US.

Thousands of children work on plantations in America, despite multiple studies identifying grave risks posed to adolescent health. A report released by Human Rights Watch (HRW) last May that found children who work on tobacco farms are more at risk of getting cancer, living with reproductive health issues and suffering from permanent neurological damage, among other side effects. The children, generally of a Hispanic migrant background, work on the farms to supplement low family incomes.

But State legislatures appear inactive. A bill to regulate the practice recently was debated in Virginia but was voted down.

After significant lobbying, a number of large tobacco companies and associations have implemented policies that ban employing workers under 16.

Anti-tobacco activist Laura Graen believes the move is long overdue. “While any move to improve its business practices is welcome, given its history, it seems the tobacco industry is more focused on doing the right thing for its public image than safeguarding the rights of child workers.”

Later this year Rhode Island Congressman David Cicilline (D) is expected to reintroduce a federal bill that would prohibit children under the age of 18 from working in direct contact with tobacco.

Despite the apparent political inaction up until now, Jo Becker of HRW’s children’s rights division is enthusiastic about the recent attention:

“There’s certainly been a lot of interest [at a national level]”. 



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February
13
 

Israeli defence forces under fire for abuses during Gaza War

Independent investigators commissioned by Physicians for Human Rights-Israel have concluded last year’s war in Gaza involved “several serious violations of human rights and international humanitarian law” by the Israeli Army, including attacks on healthcare workers and facilities.  

Most estimates put the Gazans killed in the 50-day war at over 2,100, of whom at least 70% were civilians, including over 500 children. Over 11,000 were wounded and over 100,000 made homeless. Seventy-three Israelis were killed: 67 soldiers and 6 civilians, including one child and one migrant worker. 469 soldiers and 255 civilians were wounded.

In a report, No Safe Place, the investigators – who came from South Africa, Germany, Denmark, USA, Switzerland and Gaza – describe a number of ethically-dubious incidents. These included using civilians as human shields, shelling a civilian convoy, attacking a clinic and interfering with medical evacuations. They were  unable to conclude whether these and other abuses were the policy of the Israeli Army or whether they were the responsibility of individual soldiers.

“The attacks were characterised by heavy and unpredictable bombardments of civilian neighbourhoods in a manner that failed to discriminate between legitimate targets and protected populations and caused widespread destruction of homes and civilian property. Such indiscriminate attacks, by aircraft, drones, artillery, tanks and gunships, were unlikely to have been the result of decisions made by individual soldiers or commanders; they must have entailed approval from top-level decision-makers in the Israeli military and/or government.”

The report broadly corroborated other versions of the conflict by United Nations agencies. In January the International Criminal Court began its own investigation of possible war crimes violations. 

A spokesman for Israel’s foreign ministry dismissed the document as biased and poorly informed. “The report is laced with biased information, based on one sided sources whose credibility is questionable. Had the information in the report been shared with Israeli authorities prior to its publication, our input could have been incorporated. Sadly, this was not the case, and the result is a report bearing a low level of credibility, whose contribution to understanding the conflict between Israel and Hamas this summer is very low.”



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February
13
 

Searching for a new word for suicide

A group of right-to-die activists is searching for a new word for suicide by conducting an internet survey.

“Suicide” evokes nooses, bridges, bullets, insecticide and 20-storey buildings, a depressing panorama for the members of the unnamed group. To them, a violent exit is suicide through depression, a clinical condition which can often be treated successfully.

“This is very different from the situation in which suffering, terminally ill individuals choose to hasten their dying,” the survey says. “Such individuals wish to end their life in a peaceful and dignified manner, at home, with family around them. To most people, this is something else, not suicide.”

How is the more dignified way of shuffling off the mortal coil to be called? “Hard as it is to believe, the English language has no word for this different kind of dying, this hastening of death. The purpose of this survey is to find out if there might be a word or phrase that can be widely used to denote this different kind of dying.”

The survey also asks readers what they think of the following terms: self-deliverance, dying/death with dignity, rational suicide, humane, self-chosen death and a freshly-minted euphemism, dignicide.

Make your suggestions here



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February
13
 

Bioethicists push “3-parent embryos” in US

After “three-parent embryos” were legalised in Britain last week, some American bioethicists immediately took to the media to promote the technique.

In an article in Wired, “Is It Ethical to Create Babies From Three DNA Sources? Absolutely”, Art Caplan, who is probably the best-known American bioethicist, argues that it will prevent the birth of disabled children. He says that it is almost certainly safe and will not involve three parents. Like many other scientists, he contends that it is not eugenics and will not lead to eugenics. The mitochondria play an insignificant role in determining personality. “Transplanting mitochondria is not going to be the method used to create enhanced babies. Traits like height, intelligence, strength, balance, and vision don’t reside in the battery part of our cells.”

And in the Wall Street Journal, the head of a master’s program in bioethics at Columbia University, Robert Klitzman, argues that “three-parent embryos” are to be welcomed. Its opponents are scaremongering, he argues. It is an ethically straightforward procedure, like organ transplantation. “As biotechnology continues to advance and improve human health, we need to beware of applying frightening metaphors when they do not fit, and only distort and mislead.”



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February
13
 

How will conscientious objectors fare in Canada?

Conscientious objection to “physician-assisted dying” is shaping up as a major issue among doctors in Canada after last week’s Supreme Court ruling which legalised it.

As an article in the CMAJ, the journal of the Canadian Medical Association, points out, professional associations will play a major rule in writing the rules in the federal and provincial legislatures. The Court’s decision has been suspended for a year to allow this, so, technically speaking, assisted suicide is still illegal.

The Supreme Court and the CMA president, Dr Chris Simpson, insisted that doctors must be allowed the right to conscientious objection. What this means in practice is fuzzy.

“The core of that reconciliation will be that we respect individual doctors’ rights to conscientiously object,” says Dr Simpson. “That’s in patients’ best interests. Ultimately, no patient is going to want their physician pulled in against their will to help them with such a profound issue.” 

However, Dr James Downar, who wrote a CMAJ Commentary on physician assisted death last year, interpreted these reassurances in a way which is sure to alarm some doctors. He believes that regulations must force doctors with conscientious objection to refer requests for PAD to a more willing colleague. Otherwise some people will not be able to avail themselves of their newly recognised Charter right to assisted death.

Another issue which interests Americans is whether Canada will allow “suicide tourism”, as Switzerland does. Washington Post writer Rachel Feltman points out that there is an obvious case to support it: if “ no one can stop an able-bodied person from ending their life,  so preventing a terminally-ill patient from receiving the help they needed to do so should be considered a discriminatory act”.

On the other hand, “Given the strong emphasis on illness and the patient-doctor relationship in Canada's ruling, it's highly unlikely that the country would adopt such a liberal suicide policy.” But since the regulations are still to be written, no one can be sure. 



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February
07
 

UK surgeons call for regulation of cosmetic “cowboys”

Sick and tired of horror stories of botched cosmetic surgery by unqualified doctors, the Royal College of Surgeons in the UK, is calling for a register of approved cosmetic surgeons. The RSC says that patients who have surgery for aesthetic rather than medical reasons should have access to clear, unbiased and credible information about their surgeon, care provider, procedure and likely outcomes.

To obtain certification, surgeons will have to be registered in the area of training that covers the operations they wish to perform.  They will also need to demonstrate they have:

  • undertaken a minimum number of procedures within the relevant region of the body in a facility recognised by the health regulator;
  • the appropriate professional skills to undertake cosmetic surgery; and
  • provide evidence of the quality of their surgical outcomes.
  • Certification will only permit surgeons working in the private sector to undertake cosmetic surgery on the areas of the body that relates to the speciality they trained in.

The cosmetic surgery industry has been under intense scrutiny since thousands of women were fitted with sub-standard breast implants made by a French company, Poly Implant Prothese. UK ministers have criticised it as a "cowboy industry" of "murky practices".

Gary Ross, a consultant cosmetic and welcome but that more needed to be done: "We really need it to be mandatory; we need every plastic surgeon and cosmetic surgeon to be involved in it and be regulated and certified.”

Melanie Latham, a legal academic at Manchester Metropolitan University, was even more critical. She wrote: “90% of patients are women and they are paying a high price in more ways than one: they pay out thousands of pounds for treatments, then can suffer the consequences of scarring, pain, and lack of after-care from sub-standard providers.”

The Medical Defence Union, which insures about half of the doctors in the UK, complained in 2012 the rates of compensation for cosmetic surgery patients was far higher than for other procedures. It said that many clinics that did not offer proper aftercare and ignored patients' complaints. Surgeons sometimes vanished after causing suffering and their staff would undertook cosmetic work without full liability insurance.



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February
07
 

US public and scientists see world through different glasses

Despite similar views about the overall place of science in America, the general public and scientists often see science-related issues through a different lens, according to a new pair of surveys by the Pew Research Center and the American Association for the Advancement of Science (AAAS).

The report finds significant differences in views on 13 science-related issues. For instance, there is a:

  • 51-percentage point gap between scientists and the public about the safety of eating genetically modified foods -- 88% of AAAS scientists think eating GM food is safe, while 37% of the public believes that.
  • 42-percentage point gap over the issue of using animals in research -- 89% of scientists favor it, while 47% of the public backs the idea.
  • 40-percentage point gap on the question of whether it is safe to eat foods grown with pesticides -- 68% of scientists say that it is, compared with 28% of citizens.
  • 37-percentage point gap over whether climate change is mostly caused by human activity -- 87% of AAAS scientists say it is, while 50% of the public does.
  • 33-percentage point gap on the question about whether humans have evolved over time -- 98% of scientists say we have, compared with 65% of the public.

There is no single direction of differences between scientists and the public. By a 20-percentage point margin, citizens are more likely than scientists to favor offshore oil drilling. And by a 12-point margin, the public is more likely to say that astronauts are essential for the future of the US space program.

"We were surprised by the size of those differences and how often they occur," said Cary Funk, of Pew.

There is agreement between the public and scientists on one core issue: Both groups believe that science, technology, engineering and math education (STEM) in America's elementary and secondary schools is not performing well. These surveys find that science holds an esteemed place among citizens and professionals, but both groups are less upbeat about the scientific enterprise than they were in 2009 when the Pew Research Center conducted similar surveys.

A majority of adults say science has made life easier for most people (79%) and has had a positive effect on the quality of US health care (79%), food (62%) and the environment (62%). At the same time, the share seeing a negative contribution of science has ticked up across each of these measures compared with 2009.

"While the public is still broadly positive about the contributions of science to society, there has been a slight rise in negative views across a number of measures, suggesting some softening in the perceived value of science to society. These patterns will be important to watch over time," Funk said.



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February
07
 

Palliative care and PAD—The Benelux experience

In debates about end of life care, there are many who express concern at the potential impact of physician-assisted death on palliative care. Are there grounds for this worry?

A recent paper in the Journal of Medical Ethics says ‘no’. The paper – published by a team of researchers from Belgium’s End of Life Care Research Group – compares the development of palliative care (PC) in countries where euthanasia is legal to countries where it is not. 

The team considered changes in structural service indicators in EU countries, as well as examining increases in government spending on palliative care in Belgium over the period 2002-2011.

The results, they said, were surprising. The rate of increase in the number of structural PC provisions was highest in the Netherlands and Luxembourg. Belgium stayed on par with the UK in its development of palliative care availability. Furthermore, Belgian government expenditure for PC doubled between 2002 and 2011.

The authors tentatively suggest that concerns about effects on palliative care are unfounded:

“Does adding the ‘antibiotic’ of PAD to the Petri dish of society inhibit growth of PC resources and services? The Benelux data do not verify this concern.”

But while these findings are significant, the authors still note that only one in four of the top countries for palliative care provision in the EU is a country that allows euthanasia (Belgium). In the other three top countries, Iceland, the UK and Sweden, the procedure remains illegal.

The authors of the study also acknowledge that it will be important to examine the long term effects of euthanasia legalization: “A final comment is that the effects of legal PAD may still manifest on the longer term or in other ways.”

Time will tell what other effects euthanasia has on end-of-life care. 



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