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
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. 



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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. 



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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%.



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
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. 



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
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]”. 



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
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. 



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
07
 

The vexing question of anti-vaxxers

A major outbreak of measles in California has ignited a huge debate over compulsory vaccination in the US.

The outbreak, which appears to have originated in Disneyland theme park at Anaheim, California, led representatives of both major parties to reaffirm a rather vague and non-committal position: there must be a balance between widespread vaccination and the choice of individuals to opt out on the basis of religious or philosophical objections.

"[Vaccinations] are an important part of making sure we protect [kids’] health and public health", said New Jersery governor Chris Christie, a presidential hopeful.  "I also understand that parents need to have some measure of choice in things as well. So that’s the balance that the government has to decide." 

White House spokesman Josh Ernest said, "The president believes it shouldn’t require a law for people to exercise common sense and do the right thing." He continued,  "… This is the right thing for them to do both by their own children, but by also other children in the community. They have a responsibility to do this."

But while federal politicians have stayed at a more theoretical level, state senators have been more zealous in seeking restrictions. California senators Diane Feinstein and Barbara Boxer have sent an open letter to the state’s Health and Human Services department, requesting that only children with medical conditions be exempt from vaccination.

"Parents who refuse to vaccinate their children not only put their own family at risk, but they also endanger other families who choose to vaccinate", the senators asserted.

In an article in the National Law Review, Georgetown University health law expert Lawrence O. Gostin argues that the risks of not vaccinating outweigh the importance of personal choice:

“The ethical question is whether a layman's view of vaccine risk, unsupported by evidence, ought to prevail when the consequence of failure to vaccinate is the spread of dangerous, sometimes lethal, diseases…What has happened is that religious and conscientious objectors cluster in distinct neighborhoods, which leads to outbreaks throughout the community. The tragedy of the commons is that if enough people opt out, everyone becomes at risk.”


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
07
 

Canada’s supreme court strikes down ban on assisted suicide

The Supreme Court of Canada 

In a landmark decision the Supreme Court of Canada ruled on Friday that prohibiting assisted suicide is unconstitutional and a violation of the country’s Charter of Rights and Freedoms.

It unanimously affirmed the decision of the British Columbia Court of Appeal which had struck down the ban and ruled that a woman suffering from ALS, Gloria Taylor, had the right to ask for assistance in dying. Its judgement in what became known as Carter v. Canada stated that it is unconstitutional to deny physician-assisted suicide to:

“a competent adult person who (1) clearly consents to the termination of life and (2) has a grievous and irremediable medical condition (including an illness, disease or disability) that causes enduring suffering that is intolerable to the individual in the circumstances of his or her condition.”

The lengthy judgement reaffirmed the reasoning of Justice Jo-Ann Prowse in the Carter case but still leaves many features of end-of-life decisions undecided. For instance, the Supreme Court declared that “We make no pronouncement on other situations where physician‑assisted dying may be sought”. It therefore refused to decide whether people may legitimately request help to commit suicide if they are simply tired of life or fearful of the future. Nor does it set an age limit for suicide requests.

While the unanimous decision is surprising, it was not unexpected. Canada has been debating assisted suicide and euthanasia for years. In 2011 a report from the Royal Society of Canada, a think tank, strongly recommended the legalisation of assisted suicide and euthanasia. In June Quebec, defying the Federal government, passed legislation which allowed it. In August the Canadian Medical Association declared that it no longer opposed it.  

The reasons underlying the Court’s decision were fundamentally two: personal freedom and security. “An individual’s response to a grievous and irremediable medical condition is a matter critical to their dignity and autonomy. The prohibition denies people in this situation the right to make decisions concerning their bodily integrity and medical care and thus trenches on their liberty. And by leaving them to endure intolerable suffering, it impinges on their security of the person.”

Unending pro-life arguments against assisted suicide, it also declared that a prohibition infringed upon people’s right to life because they might end their lives sooner than they would if they could rely upon assistance: “it has the effect of forcing some individuals to take their own lives prematurely, for fear that they would be incapable of doing so when they reached the point where suffering was intolerable.”

What about conscientious objectors to assisted suicide? The Supreme Court tried to reassure them by declaring that “nothing in the declaration of invalidity which we propose to issue would compel physicians to provide assistance in dying.  The declaration simply renders the criminal prohibition invalid.” This is a matter for legislatures and professional associations. However, it also said that “we underline that the Charter  rights of patients and physicians will need to be reconciled”, thus framing requests as a legitimate right under Canada’s charter. Opponents of assisted suicide are unlikely to be reassured.

The Court’s views on the experience of Belgium, where euthanasia has been legal for more than a decade, were interesting. It studied research by Professor Etienne Montero, a professor in bioethics and an expert on the practice of euthanasia in Belgium. He claimed that safeguards there were flimsy and that there were many abuses. Without contesting this, the Court declared that the experience in Belgium was irrelevant because of the many cultural differences between the two countries.

It will take a while for the consequences of the Carter case to work themselves out. However, it is abundantly clear that bioethicists are divided into two camps. Arthur Schafer, of the University of Manitoba hailed it as "a victory for humanity and justice."

"The fact the Supreme Court decision was unanimous reflects the overwhelming consensus in Canadian society that individuals should have their liberty respected when it comes to such important decisions as when and how we die."

 But Margaret Somerville, of McGill University in Montreal, said that it was a disaster.

 "Canada has fallen over the edge of the abyss in legalizing the intentional infliction of death on our most vulnerable citizens — those who are old, frail, disabled, depressed, mentally, physically, or terminally ill…
"This is not an incremental change, but a seismic shift in one of our most important foundational values — respect for human life at both the individual and societal levels," she said. "I believe that future generations will look back on this decision, in the light of its future consequences, as the most important, harmful and regrettable ethical, legal and public policy decisions of the 21st century."


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February
07
 

Privacy 1: security flaws

US healthcare provider Anthem Inc. has come under fire for failing to protect confidential health data, following the hacking and theft of information from a database with confidential information about 80 million patients.

On Wednesday, the company admitted that hackers had gained access to “personal information relating to consumers and Anthem Blue Cross employees who are currently covered, or who have received coverage in the past.” This included names, dates of birth, social security numbers, member ID numbers, addresses, phone numbers, email addresses and employment information, but not, apparently, medical information or credit card numbers.

“Cyber attackers executed a very sophisticated attack to gain unauthorized access”, the statement read.

The company has been heavily criticised for failing to encrypt patient data – a precaution that may have stifled the hacking operation.

“It is irresponsible for businesses not to encrypt the data,” said Trent Telford, chief executive of Covata, a large data security firm in Virginia. “We have to assume the thieves are either in the house or are going to break in. They will always build a taller ladder to climb over your perimeter security.”

Kevin Epstein, vice president of advanced security and governance at email security vendor Proofpoint, believes that in the main healthcare companies do not have the same concern for security of data as retailers or financial services companies. Breaches like the one at Anthem are, he said, “a scathing indictment of how at a board level, security has not been a crucial issue to date.”



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
07
 

Privacy 2: big data and privacy rights

A Nuffield Council review of the British Government’s ‘care.data’ scheme has found that the existing privacy framework needs major revision. 

According to the review -- the findings of which were released earlier this week -- public participation should be at the heart of big data projects in health care and biomedical research.

The report considers issues of privacy and public interest and how developments in data science have put considerable pressure on conventional means of protecting privacy (including privacy rights, data protection and duties of confidence). It concludes that good governance that involves public participation and accountability is essential to maintain public trust.

Some of the more striking recommendations include:

  • The UK Government should introduce robust penalties, including imprisonment, for the deliberate misuse of data, whether or not it results in demonstrable harm to individuals.
  • There should be complete audit trails of everyone who has been given access to NHS data, and the purposes to which they have been put.
  • An independent, broadly representative group of participants should be convened to develop a public statement about how data held by the Health and Social Care Information Centre (the entity that controls the use and availability of big health data from the NHS) 

Cambridge University professor Martin Richards – the chair of the working party that produced the report – stressed the importance of improving the existing framework:

If we don’t get this right, we risk losing public trust in research, and ultimately missing out on the benefits this type of research can bring.”

Professor Mike Parker of the University of Oxford, another member of the committee, said: “Consent is very important. It is clearly very important that people know what their data is going to be used for.”



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February
07
 

3-parent IVF approved by British Parliament

After years of debate, the British House of Commons approved the creation of embryos with genetic material from two women and one man by a vote of 382 to 128. The House of Lords will probably pass the bill, which amends the 2008 Human Fertilisation and Embryology Act, later this year.

The technique is so controversial that even its name is a matter of dispute. Supporters describe it as “mitochondrial transfer”; opponents and the media call it “three-parent embyros”. There are two approaches, one beginning with a woman’s eggs and the other with an embryo. But both transfer the nucleus of a cell with faulty mitochondria floating in its cytoplasm into a cell with healthy mitochondria from a second woman.

The headline in Nature News summed up the significance of the vote: “Scientists cheer vote to allow three-person embryos: British decision could be a watershed to approving mitochondrial replacement technique in other countries”. Britain is the first country in the world to allow mitochondrial transfer, which has been banned elsewhere because it alters the human germline and could be described as “genetic engineering”. The Food and Drug Administration in the US is currently studying the issue. If it were to green-light the technique, it could rapidly spread elsewhere.

"It's great news for the patients with mitochondrial disease. It gives them real hopes and that's just fantastic,” commented Doug Turnbull, a neurologist at Newcastle University, who has been prominent in lobbying for a change in the legislation.

The technique is meant to help families whose children would otherwise live with a mitochondrial disease. These vary greatly in severity, but at their worst the children suffer from diseased organs, gastrointestinal disorders, respiratory disorders, neurological problems, autonomic dysfunction and dementia. There are various estimates of how many families would be helped by the IVF technique. Nature News said that 2,000 women would benefit, based on a recent letter in the New England Journal of Medicine. However, the letter said that there would only be 152 women affected each year. Of these, perhaps 10 or 20 might take advantage of it.

Prof Alison Murdoch, one of the technique’s pioneers, said: “This is good news for progressive medicine. In a challenging moral field, it has taken scientific advances into the clinic to meet a great clinical need and Britain has showed the world how it should be done.”

How was it done? How did British scientists manage to persuade Parliament to overcome the “moral challenges” and to accept “progressive medicine” which its opponents described ominously as genetic engineering, three-parent babies, and eugenics? There appear to be four elements in their lobbying strategy.

Advance planning: a number of scientific, ethical and public consultations have been carried out since 2011, with the enthusiastic backing of scientific and government organisations.

Highlighting the suffering of the children and their parents. Some affected families have had very tragic experiences. One woman, Sharon Bernardi, lost all seven of her children to mitochondrial disease.

Framing the technique as a cure for children. In the media, mitochondrial transfer was consistently described as a cure for dread diseases. In fact, not one child will be cured; instead, healthy IVF children will be created. The editor of the Journal of Medical Ethics, Julian Savulescu, phrased it very carefully in an article for the Guardian: “Importantly, by doing this transplant at the very early stage of embryo development, the disease is cured. The children of the offspring of this procedure will themselves be free of mitochondrial disease. It would be eradicated forever in this family.” But in a video directed at members of Parliament, he said, less cautiously, “every year 150 children are born with this condition and you have the power to cure them.”

Defining the human person as nuclear DNA. Mitochondrial DNA constitutes only 0.054 per cent of the total DNA in a cell, according to Dame Sally Davies, Chief Medical Officer for England, who played an important role in the debate. It is the DNA in the nucleus “which determines our personal characteristics and traits such as personality, hair and eye colour”. This was repeated over and over by supportive scientists: mitochondrial DNA is just a battery pack. No one explained how mitochondrial DNA could be both a negligible part of the human person and could also have devastating effect upon a child’s organs, systems and personality.

Redefining genetic engineering. Instead of defining genetic engineering as modification of the genome, scientists spoke of it as modification only of nuclear DNA. The mitochondrial DNA was simply a replaceable module or an interchangeable spare part. In one of the cleverest redefinitions, Stephen Wilkinson, a bioethicist at Lancaster University, “mitochondrial replacement isn’t genetic modification as such, but rather donation … nothing really new is being added to the human gene pool.” In other words, genetic engineering only happens if an artificial or non-human gene is added to the embryo.

Not all scientists welcomed the decision. Paul Knoepfler, of UC Davis School of Medicine, and a leading American stem cell researcher, thought that legalisation was premature:

“There is no doubt that mitochondrial diseases are truly terrible and need to be addressed, but if the potential outcomes from the technology are still vague, there are safety concerns, and it raises profound ethical issues such as changing the human genome heritably as is the case here, then my view is that a careful approach is both practical and logical. We cannot at this time have a reasonable expectation that this technology would be safe and effective. That may change in coming years with new knowledge. I hope so.
“As strange as it may sound, although mitochondria have been studied for around 150 years, they remain in many ways still a new frontier for science with many mysteries. We are only now, for example, starting to understand how the mitochondrial genome works. There was just recently a very unexpected discovery that the mitochondrial genome produces thousands of potentially powerful non-coding RNAs with largely unknown functions. Nobody has any clue how these RNAs might behave in the context of mitochondrial transfer.”


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January
31
 

Torture: sometimes a man’s gotta do what a man’s gotta do, say bioethicists

Torture is an issue on which the public might expect bioethicists to be moral absolutists. Never again! Never ever! It was somewhat surprising, then, to read in the New York Times that one of the world’s leading animal rights theorists, Oxford’s Jeff McMahan, support torture.

There are limits, of course. Mafia toe-cutting is out, along with the amusements of serial killers and the waterboarding used by the CIA in the bad old days of the Bush Administration. But there might be cases, McMahan argues, where “Torture can be morally justifiable, and even obligatory, when it is wholly defensive – for example, when torturing a wrongdoer would prevent him from seriously harming innocent people.”

Moral absolutism leads to impossible conundrums, says McMahan.

“It is one of the problems of the absolutist view of torture that it has to identify some threshold on the scale that measures the elements of torture, such as suffering, and then claim that nothing, not even the prevention of a billion murders, can justify the infliction of that degree of harm, even on a wrongdoer. But the view does not absolutely prohibit the infliction of the highest degree of harm below the threshold. It has to concede that the infliction of that degree of harm can be permissible, even to prevent harms far less bad than the murder of a billion people. The idea that there is such a threshold is wholly implausible.”

Another utilitarian who supports the use of torture in rare circumstances is the best-known of animal rights theorists, Peter Singer. In his book The Life You Can Save: How to Do Your Part to End World Poverty, he says, “I would argue, if I find myself in the highly improbable scenario where only torturing a terrorist will enable me to stop a nuclear bomb from going off in the middle of New York, I ought to torture the terrorist.”

Another prominent bioethicist who supports torture is Frances Kamm, who teaches at Harvard University. In her recent book Ethics for Enemies: Terror, Torture, and War , she argues that torture may well be permissible in a variety of cases. She writes, “it is sometimes permissible to torture someone, at least for a short time without permanent damage, if we would otherwise permissibly kill him”.

Ivory tower arguments for torture in philosophy journals have real world consequences. McMahan relates that an American philosopher, Henry Slue, admitted that torture was not absolutely wrong in an influential article in 1978. Two CIA agents later thanked him. They were relieved to find that their day jobs were ethically justifiable. 



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January
31
 

NY families fight nursing homes for guardianship

Nursing homes in New York State have been accused of using ‘guardianship petitions’ as a means to coerce elderly residents into paying outstanding fees.

A startling expose in the New York Times this week discusses a number of instances where nursing homes have requested courts to transfer guardianship away from the family. Ostensibly these requests are prompted by family feuds, suspected embezzlement or just the absence of relatives to help secure Medicaid coverage. 

However, judges, legal experts, and others well versed in the guardianship process claim that often the petitions are used as a means of duress.

In a guardianship case last year involving a 94-year-old resident in a Jewish aged care facility, New York Supreme Court judge Alexander John Hunter issued a scathing 11-page critique of the motivations behind the petition made by the nursing home’s management.

“It would be an understatement to declare that this court is outraged by the behavior exhibited by the interested parties — parties who were supposed to protect the person, but who have all unabashedly demonstrated through their actions in connection with the person that they are only interested in getting paid,” he wrote.

In a more recent case, this time involving a family who refused to pay exorbitant rates to a Catholic nursing home, a court evaluator threw out the guardianship petition and questioned the motivations of the facility. The family spent US$10,000 in legal fees fighting the case.

Some nursing homes argue that guardianship petitions are the best way to resolve disputes about payment for care. The alternative is to sue an incapacitated resident who cannot respond.

“When you have families that do not cooperate and an incapacitated person, guardianship is a legitimate means to get the nursing home paid”, said Brett D. Nussbaum, a lawyer for the Catholic nursing home Mary Manning Walsh.



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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January
31
 

No longer anonymous in Germany

The days of anonymous sperm donation are over in Germany. The German Supreme Court has settled a patchwork of decisions and ruled that children of any age may request the identity of their biological father. "There is no specific minimum age necessary for the child," the judges said. Parents may make a request on behalf of the child.

The only limitation is that the parents (usually the mother) must be able to prove that the child wants to know and that the effect of disclosure upon the donor must be taken into account. However the decision stated that the right of children to know the identity of their fathers normally outweighs the donors’ right to privacy.

The case was brought by sisters aged 12 and 17 who had been denied access to their sperm donor father’s identity. Their parents had waived a right to access at the time of conception. The status quo of German legislation was that children can only access this information when they are 16. However the Supreme Court said that children begin to ask questions about their origins as early as kindergarten.

Since the 1970s, an estimated 100,000 children have been born from sperm donation in Germany.



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January
31
 

FGM convictions: Egypt 1, England 0

For the first time ever, an Egyptian doctor has been convicted of performing female genital mutilation. Dr Raslan Fadl was sentenced to two years hard labour for operating on a 13-year-old girl in 2013 who later died of complications. Dr Fadl denied performing FGM, which is illegal in Egypt, and was backed up by the girl’s father. He was acquitted by a lower court but prosecutors appealed and the ruling was overturned.

By contrast, in England, recent statistics show that FGM is performed on at least 15 girls every day and not one single doctor has ever been convicted. In December alone there were 558 newly identified cases of FGM.

John Cameron, of the Health and Social Care Information Centre, said: "These new figures indicate that female genital mutilation is a bigger problem in the UK than we thought and there are obviously children at risk of being subjected to this cruel and unnecessary practice right now.

One case is currently being tried. Dr Dhanuson Dharmasena allegedly performed FGM on a patient at the Whittington hospital in north London. This is the first time a case has made it to the courts, although FGM has been illegal in the UK since 1985.

According to the National Health Service more than  20,000 girls under the age of 15 are at risk of FGM in the UK each year and that 66,000 women are living with the consequences of FGM. The true figures are unknown.  Sometimes girls are taken back to their countries of origin during the summer holidays so that the primitive surgery can heal before they return to school.

Last year, a number of ministers signed a declaration of zero tolerance. “This government is absolutely committed to preventing and ending this extremely harmful form of violence,” they wrote. One year later, the figures seem to be rising. 



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January
31
 

Sex-selective abortion: I’m OK with that, says UK academic

Sex-selective abortion is almost universally reviled – by opponents of abortion because it kills an unborn child and by feminists because it entrenches discriminatory attitudes towards women. However, it has its defenders, even in the Western world.

Writing in The Conversation, Dr Pam Lowe, a sociologist at Aston University in the UK, argues that “You cannot promote gender equality by enacting laws that place restrictions on women’s bodies. Banning sex-selective abortion opens up a world in which there is such thing as a ‘good’ and ‘bad’ reason for an abortion.” To her mind, a ban is a plot by pro-life politicians to make incremental restrictions on a woman’s right to abortion, both in the UK and in the US.

“Although it may seem counter-intuitive, supporters of women’s rights need to oppose the banning of sex-selective abortion. This campaign has nothing to do with ending gender discrimination. It is a strategy of the pro-life movement to reduce women’s access to abortion more generally. While the continuing discrimination against women which leads to coercive abortion for gender reasons is a serious problem, you cannot end gender oppression by placing new restrictions on women’s lives.”


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January
31
 

Life sustaining treatment 1: withdrawal

Withdrawal of life-sustaining treatment is a common and more or less accepted procedure in end of life care. There is, however, significant disagreement about the underlying moral framework used to justify it. A recent article in the journal Bioethics attempts to address one key question involved– whether withdrawal of life sustaining treatment is an act of killing.

Andrew McGee, a lecturer in health law from the University of Queensland, argues that withdrawal of care is an act that causes death, but that it should be considered an example of ‘letting die’ rather than ‘killing’.

Whereas many others have argued that withdrawal of care is a mere omission, McGee believes it implausible to characterise discontinuation of treatment as a passive procedure:     

“Allowing a consequence can still be causing that consequence, in the sense that I turned off the heating and allowed the room to cool down by doing so…my turning off the heating is what allows the room to cool down and so causes the room to cool down in that sense.”

“One [cannot] distinguish letting things happen from causing to them to happen for once we concede that letting the room cool down can still be described as causing it to cool down, it would follow that letting someone die could, by parity of reasoning, be described as causing them to die.”

But while discontinuation of treatment is a kind of act, it is nevertheless not the cause of death itself; it is only the cause of the timing of death. McGee argues that withdrawal of treatment is part and parcel of the decision to provide life-sustaining measures in the first place. The end of this whole procedure is to extend life for a certain time; one is not causing the patient’s death when they chose to end the process:

“If we are merely delaying death by providing life-prolonging measures, then, in a sense, we are delaying the point at which we withhold those measures. The withdrawal merely allows a process that was underway, but then halted in its tracks, to resume, which is equivalent to a later decision not to halt the process in its tracks.”

I don't pretend to have provided a comprehensive account of McGee’s thesis, but I do hope to have indicated the direction of his argument. His thesis, when taken as an absolute statement on the matter, conflicts with a position held by two unlikely allies, bioethicist Julian Savulescu and Catholic ethicist Anthony Fisher. They both argue that withdrawal of life sustaining treatment is, at least in some cases, tantamount to killing. McGee in contrast, asserts that withdrawal only affects the time of death; it does not itself cause death.



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January
31
 

Life sustaining treatment 2: A family perspective

We have examined the underlying philosophy behind withdrawal of care, but some would argue that one misses the existential realities of families grappling with the decision of whether to withdraw care. A new study published in the latest edition of the Journal of Medical Ethics tries to capture just this.

The study, prepared by Celia and Jenny Kitzinger from the UK based Chronic Disorders of Consciousness Research Centre, provides empirical data on the attitudes of families towards withdrawal of end of life care. From the information collected the authors argue that families often desire to terminate the life of their loved one, but nevertheless are repelled by the thought of ‘starving’ him or him.

Kitzinger and Kitzinger interviewed over 51 individuals who had a relative with a severe brain injury that had rendered them unconscious or minimally conscious. Participants were given much time to tell their stories and the interviewers refrained from asking generic questions.

The authors found a number of trends:

1)   Families generally concluded that the individual would rather be dead only after they had exhausted all possibilities of bringing the individual back to a fully conscious state.

2)   Following on from this, it was evident that with time families tended to shift their attitudes over a period of years to the view that the participant would rather be dead.

3)    At this point families put in place ‘ceilings of care’ such as ‘do not attempt cardiopulmonary resuscitation’ (DNACP) and an agreement not to aggressively treat infections (e.g., with intravenous antibiotics).

4)   Despite their desire that their loved one’s life be ended, family members were generally very frightened at the thought of the patient ‘starving to death’.

5)   A number of interviewees, with varying levels of seriousness, had thought of illegally killing their relative in a ‘human way’, so as to avoid the withdrawal of Artificial Nutrition and Hydration.

The authors conclude the article by suggesting that ‘other ways of bringing about death’ such as ‘terminal sedation’ be offered to patients and (as proxy decision makers) their families.

One does wonder, considering the situation that the families find themselves in, whether they have sufficient opportunity and encouragement to attend counseling services. This is the flip side of what the authors recommend, but perhaps of equal or greater importance.  



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January
29
 

Summer school in bioethics in Manhattan

Interested in getting an overview of bioethics? A Manhattan-based NGO, the Global Bioethics Initiative, has organised a bioethics summer school in June and July. We asked Dr Ana Lita, the organiser, to explain what’s happening.

Global Bioethics Initiative works closely with the United Nations and its agencies. What interest does the UN have in bioethics?

The Global Bioethics Initiative is a not-for-profit international organization founded in 2011. We keep the international community, policy decision-makers, the media, and the public informed of important bioethical issues through educational activities, like the summer school. Late last year, for instance, we organised a seminar on organ trafficking and human rights.

GBI is associated with the UN Department of Information and we are hoping for formal affiliation with the UN Economic and Social Council. We hope that our programs will eventually have a global reach through these links.

This is your first summer school. What prompted you to organize it?

Here in New York we have access to world-renowned experts and world-class institutions and hospitals. But we realized that there was no summer educational opportunity in bioethics from a global perspective in NYC, for students and professionals  from allover the world. The globalized nature of bioethics lends itself to a more collaborative and international educational experience and in global capital like New York City, we have the benefit of having access to not only world-renowned faculty for the summer school, but also to world-class institutions and hospitals to facilitate learning in and out of the classroom.

The members of our faculty include bioethicists, lawyers, policy-makers, activists, transplant surgeons, researchers and practitioners. Many serve on influential international and national boards including, the WHO, UNESCO International Bioethics Committee, the United States Senate Committee on Aging, and the United Network for Organ Sharing. 

Where will most of the students come from? Are many younger students taking an interest in bioethics?

We welcome students of all ages, including health care professionals, policy makers and journalists, but we are aiming especially at undergrads and post-grads planning to work in academia, biomedical and health-related industries.

Several interns work with your organization every year. Do many of them continue working in bioethics?

Yes, GBI has regular unpaid internships. We welcome intern students and volunteers interested in actively participating in our programs. Our interns and volunteers should expect to gain practical skills in organizing and advertising events, a greater understanding of the daily running of an international NGO as well as the opportunity to work alongside international organizations and UN agencies. As a former assistant professor of Applied Ethics myself, I work with students to accommodate university or departmental requirements to receive school credit for the internship. We welcome candidates interested in interning with GBI to contact us. 

The summer school's lectures cover a wide range of topics. Which do you think will attract the most interest?

Controversial issues such as embryonic stem cell research, human cloning, cryonics, human genetic engineering, markets in organs, euthanasia and abortion, and human enhancement are topics of interest for most students.

There are other summer programs in bioethics but I am sure that none of the others offers a global perspective and a UN affiliation. The faculty is exceptional, with a complex multicultural educational and experience background. Many are full professors sitting on active international bioethics committees and boards.

Over five weeks, we hold lectures Monday through Thursday, and have field trips on Friday, plus social events. The early registration deadline is March 15. Contact Ana Lita for information.



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January
24
 

Animal welfare abuses exposed at Nebraska research farm

Cows grazing at the U.S. Meat Animal Research Center in southern Nebraska

The Obama Administration has reacted swiftly to a scathing report on animal welfare at a Federal government laboratory in Nebraska in the New York Times. Agriculture Secretary Tom Vilsack has demanded an updated animal welfare strategy within 60 days. An animal welfare ombudsman has been appointed for the unit.

The Times expose claimed that treatment of animals at the US Meat Animal Research Center was far below basic animal welfare standards. Instead of trying to minimise animal pain, the center’s goal was to maximize meat production. It described some stomach-churning experiments in animal breeding and care: sows which produced so many offspring that they were crushed to death; cows which bore twins and triplets which were deformed and stillborn; lambs left to be torn apart by coyotes, among others.

Although the US Congress passed a landmark Animal Welfare Act in 1966, there was a gaping loophole: its provisions did not apply to research on farm animals used in agriculture.

“They pay tons of attention to increasing animal production, and just a pebble-sized concern to animal welfare,” James Keen, a veterinarian who worked at the center for 24 years told the Times. “And it probably looks fine to them because they’re not thinking about it, and they’re not being held accountable. But most Americans and even livestock producers would be hard pressed to support some of the things that the center has done.”

In a letter to the Times, Wayne Pacelle, the CEO of the US Humane Society, said that the “grotesque and inhumane” experiments at the center showed that government and business were colluding to treat animals as “throwaway objects”. “Is it any wonder that millions of Americans are now cutting their meat consumption and eating higher-welfare animal products when this is how government and agribusiness handle their animal-care responsibilities?”



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January
24
 

“Virginity tests” unethical, says South African physician

While virginity tests for unmarried women have been universally regarded as unethical in Western countries, the practice is spreading in immigrant communities. Physicians in European countries have been asked to examine whether a girl’s hymen is intact, creating an ethical dilemma for them. If they comply, they may expose the girl to stigmatization, or even put her at risk of being the victim of an honour killing. If they certify her virginity regardless of the result, they will break the doctor’s compact of trust and honesty with patients.

Writing in the Journal of Medical Ethics, a South African physician argues that medical colleges should declare that virginity tests are unethical, thus giving doctors a right to refuse. The Quebec College of Physicians has already done this.

The author, Dr Kevin Gary Behrens, of the Steve Biko Centre for Bioethics, University of the Witwatersrand, is familiar with the issue, as it is a serious problem in South Africa. Girls who “fail” are called “rotten potatoes”. But girls who pass could be targeted by rapists or men who believe that intercourse with a virgin will “cure” AIDS.

He points out that research in The Lancet and the BMJ has shown that  “virginity testing” is devoid of scientific value.

“This has the effect of rendering every virginity certificate ever issued by a physician scientifically fraudulent. Thus, for a physician to agree to perform a virginity test entails a flagrant disregard of the principle that medicine should be practised on the basis of scientific principles. The moral obligation of a physician who is approached to perform such a test is clear: the physician should inform the client that it is simply not possible to do what is being asked. Since there is no scientific basis upon which any physician can certify that a particular woman is or is not a virgin, it would be unethical for any physician to concede to such a request.”

The tests are also socially harmful, argues Dr Behrens, as they perpetuate stereotypes about women, misogyny and patriarchal attitudes. 



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January
24
 

UK scientists call for debate on designer babies

Novel techniques of editing the genome have inspired some British scientists to call for a public debate on designer babies. Dr Tony Perry, of the University of Bath, recently announced that his team had successfully edited mouse DNA at the moment of conception. Using “Crispr” technology, it will be possible to delete and insert DNA in human embryos. "There's much speculation here, but it's not completely fanciful, this is not HG Wells, you can imagine people doing this soon [in animals],” he told the BBC. "At that time the HFEA [the UK's fertility regulator] will need to be prepared because they're going to have to deal with this issue."

Changing the DNA could remove genetic diseases from a bloodline, but it would also be genetic engineering.  "Obviously in the UK, this is not allowed and there would have to be a change in regulations, which I suspect would have enormous problems,” Professor Robin Lovell-Badge, of the UK Medical Research Council, said. "But it is something that needs to start to be debated. There has been a blanket ban on germ-line therapy, so there needs to be a debate about that and some rational thought rather than knee-jerk reactions that, 'No you can't possibly do that.'"

A spokesman for the UK's Human Fertilisation and Embryology Authority commented: "We keep a watchful eye on scientific developments of this kind and welcome discussions about future possible developments."



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January
24
 

The ethics of skin colour stereotypes

At the intersection of marketing and bioethics is the issue of perpetuating racist stereotypes. In many countries, especially South Asia, a preference for lighter skin predates European colonialism. By some estimates the “fairness market” in India for both men and women is worth more than US$500 million. Matchmaking sites often mention “wheaten skin” as a desirable feature of a prospective soulmate.

Unilever’s Fair & Lovely is the market leader in India. Overseas brands are pushing similar products: L’Oreal’s White Perfect Deep Whitening Double Essence, Revlon’s Absolute Whitening Skin Care Range, Estee Lauder’s White Light, Yves St. Laurent’s Blanc Absolute Serum, Elizabeth Arden’s Visible Whitening Pure Intensive and so on. The Vaseline brand created a controversy with a Facebook widget which allowed users to lighten their complexion.

Marketing academics from the University of Hull Business School in the UK and James Cook University in Australia have questioned the ethics of these products in a recent paper. They claim that there are significant safety issues with these skin lightening products. While most tout the power of vitamins, many contain high levels of mercury. Another dangerous agent is hydroquinone, which can be carcinogenic.

The products are popular and their manufacturers claim that they are harmless. However their critics claim that there is social harm:

Advertisements in all the countries in which Fair & Lovely is sold show product users getting better jobs, getting married or having a brighter future (and being noticeably happier) as a result of their lighter skin. The primary target market is women aged 18 – 35, with the poor being a significant segment. There are reports of girls aged 12 – 14 using the product, which is marketed in ‘affordable’ small packages. Critics have claimed that the ads are socially objectionable, racist, demeaning or even ‘repellent’. Two ads have been taken off air in India as a result of protests, but others are still running.

However, demand is strong for the products. “The company is marketing a legal product, it is not breaking any laws, and it appears to have a loyal customer base, but can it claim to be doing good while it does well out of sales of the product?” The academics leave the question unanswered.



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January
24
 

Physician assisted death versus palliative care

Arguments against physician assisted suicide and euthanasia often turn on a claim about the need prioritize the development of adequate palliative care. A new article in the Journal of Medical Ethics provides a sophisticated critique of this archetypal argument.

Joaquín Barutta (Ruhr University, Germany) and Jochen Vollmann (Italian Hospital University, Argentina) discuss a number of variants of the ‘argument from palliative care’ – the view that the existence (or, in some cases, the non-existence) of palliative care means that we should not allow physician assisted death (PAD). Barrutta and Vollmann claim that each variant of the position is flawed.

One formulation, sometimes put forward by more cautious pro-euthanasia advocates, is that a lack of available palliative care limits a patient’s autonomy. If a patient does not have all the options available to him, then how can he make a truly free decision? Barutta and Vollmann respond by arguing that ‘autonomy’, even in situations where palliative care is not available, is still present.

"Certainly, a lack of better options limits the choices a person has available. However, an autonomous decision is not the same as a decision after trying all other options… All we should require is that their choice is the result of correctly applying the skills needed to make a decision based on their own values and beliefs."

Barutta and Vollmann continue from this claim to discuss the second variant of the position, ‘the argument from existing alternatives’. Some would argue that patients should try all existing alternatives first before opting for euthanasia. The authors respond:

“we interfere with the autonomous decision of these patients to request PAD that we have discussed previously. Since doing so results in more suffering, it is hard to see how this could be justified using this argument.”

The authors also discuss the claim that PAD will be used primarily by those from low socio-economic backgrounds, precisely those social classes lacking adequate palliative care. They put forward the following rejoinder:

“PAD derive from lack of economic resources to get better care, forbidding PAD does nothing to help these patients. On the contrary, as already noticed when analysing the previous argument, it reduces their options even more, condemning many of them to a worse death.”

It strikes this writer that the oft-made argument from ‘lack of autonomy’, though not without promise, needs to be revisited if it is to address Barutta and Vollmann’s critique.  



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January
24
 

Creation: a product for the masses?

What if we could democratise creation?

This may sound like a pretentious thought from a sci-fi movie, but one San Francisco geek believes we can make it a reality.

Austin Heinz, the founder of the start-up Cambrian Genomics, dreams of a future in which customers tinker with the genetic codes of plants and animals and even design new creatures on a computer.

In a makeshift laboratory in San Francisco, his synthetic biology company uses lasers to create custom DNA for major pharmaceutical companies. The synthetic biology is nothing new – what’s novel is Heinz desire to make the technology cheap, fast and affordable, such that private users can take advantage of it.

Anyone in the world that has a few dollars can make a creature, and that changes the game,” Heinz said. “And that creates a whole new world.”

The 31-year-old CEO has managed to attract over $10 million in support an investments from Silicon Valley venture capitalists. A significant amount has come from Peter Thiel’s venture firm Founders Fund. 

Venture capitalist Timothy Draper, an investor in the company, expressed his enthusiasm for the project: “I love Cambrian,” he said. “The company is literally printing life. Can’t wait to see all the great things that come of it.”

Understandably, bioethicists have reservations. It is still unclear whether the company has adequate security measures to prevent customers from requesting dangerous DNA sequences. And the hubris of the Heinz’s rhetoric has some ethicists alarmed. Marcy Darnovsky, executive director of the Center for Genetics and Society, a bioethics watchdog group in Berkeley, described Heinz’s belief that “every problem can be solved by engineering” as a kind of “techno-libertarianism.”



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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January
24
 

US Supreme Court to debate the use of new three-drug execution method

The Supreme Court of the United States has agreed to hear a case about the constitutionality of a new execution method being used in Oklahoma's correctional facilities.

Due to a shortage of customary execution drugs, Oklahoma's authorities are using a new combination of barbiturates to execute prisoners. The combination involves the drugs midazolam, intended to cause unconsciousness, rocuronium bromide, which works as a paralytic, and then potassium chloride that serves as a heart-stopping agent.

In the case Glossip v. Gross, No. 14-7955, three Oklahoma inmates are claiming that the new procedure violates the eighth amendment. They argue that it poses a significant risk of 'terrible suffering'.

Motivation for the case has come in part from the botched execution of Joseph Rudolph Wood in Arizona last July.

Medical experts testifying on behalf of the inmates at an evidentiary hearing said the effects of high doses of midazolam, which Oklahoma adopted, were too unpredictable to justify its use. They reminded the court that FDA has not approved the use of midozolam as a general anaesthetic in clinical practice.

The case is likely to appear before the Supreme Court this term.

“Petitioners are pleased that the Supreme Court will review their case,” said Dale Baich, one of the attorneys representing the death row inmates. In a statement, Baich said that the protocol is “not capable of producing a humane execution, even if administered properly.”



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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January
24
 

China’s gender imbalance “most serious and prolonged in the world”

China has by far the greatest gender imbalance of any nation in the world, with conservative estimates from 2014 putting the ratio at 115.8 males to every 100 females.

The peak body responsible for family planning in the country, the National Health and Family Planning Commission, this week made its strongest statement yet on the crisis.

In a document published on the commission’s website, officials wrote, “China's sex imbalance problem among newborns is the most serious and prolonged in the world and the population it affects is the greatest”. They noted that there are over 33 million more men than women in the country.

Statistics published by the commission, suggest that the ratio has dropped from 121.18 in 2014 to 115.8 last year. Nevertheless, as the commission itself admits, “the gender ratio at birth is still dangerously high”.

There is an extant domestic ban on the use of blood testing to determine the sex of a fetus, but many Chinese couples are attempting to send their blood samples out of the country to be analysed by overseas agencies. In their statement last week, commission officials vowed to crack down on the practice, and reminded medical staff that carrying, mailing or transporting blood samples abroad is illegal.



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January
24
 

Dutch euthanasia clinic has knuckles rapped over tinnitus death

A Dutch end-of-life clinic has been reprimanded for the third time in a year for moving the goal posts for euthanasia. The Levenseindekliniek in The Hague helped a woman to die because she complained of severe tinnitus, or ringing in the ears. An independent review commission conceded that tinnitus could satisfy the criteria for legal euthanasia, but said that the clinic should have referred 47-year-old Gaby Olthuis, a mother of two, to a psychiatrist. The other two complaints concerned an elderly woman who did not want to enter a nursing home and an elderly psychiatric patient.

The symptoms that Ms Olthuis claimed to have were severe: she constantly heard the sound of screeching metal and even the rustle of opening a plastic bag hurt.

Levenseindekliniek opened in 2012 for patients who could not find a doctor who agreed to euthanase them. Since then they have helped about 250 people to die. The director of the clinic, Steven Pleiter, said that he was exasperated by the reprimand. "We try to help people and do it in a very precise and careful manner. We find it annoying that we now have to deal with this for the third time."



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January
24
 

French parliament begins debate on euthanasia

The French parliament opened a long-awaited debate on euthanasia this week. President Francois Hollande and the prime minister, Manuel Valls, both support liberalising the law at least to allow terminal sedation “to allow people to depart peacefully and without suffering”.

A letter arguing against the proposal appeared in Le Figaro this week signed by 23 members of parliament.  

“At a time when our country is debating how to live together, it is unacceptable to open the door to a right to death, which does not come under the law. Far from being the ultimate freedom, the choice of euthanasia assumes the alienation of the individual to his pain. The solution is certainly not to destroy life to eliminate suffering, but rather to seek ways to ease pain and, to the extent reasonably possible, to protect life.”


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January
17
 

Thailand to have ‘third gender’ in new constitution

Thailand is poised to recognise a third gender in its new constitution, with the constitutional drafting panel saying on Thursday that “Thai society has advanced”.

The panel, composed of members handpicked by the ruling junta, said that “there are not only men and women”, and that there is a need to recognize all genders.

“We need to protect all sexes – we consider all genders to be equal”, panel spokesman Kamnoon Sittisamarn told journalists.

The panel will send details of the measure to the National Reform Council by April. It will need to be formally approved by the ruling junta, also known as the National Council for Peace and Order.

Thailand has a significant LGBT community, with homosexual, transgender and transsexual people playing a prominent role in the country’s entertainment industry.

In 2012, a group of lawmakers and LGBT activists formed a committee to draft legislation recognizing same-sex couples that would, among other things, enable them to marry.

But discussion of the draft law was put on ice while Thailand struggled with political protests in 2013 and 2014.



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January
17
 

Don’t shoot the messenger

Should we always blame the journalist for poor science reporting? Perhaps not, according to a recent paper published in the British Medical Journal.

The article, written by a team from Australian and British Universities, found a direct correlation between ‘exaggeration’ in academic press releases and overstatements in popular media.

The stated aim of the study was to examine ‘the association between exaggeration in health related science news and academic press releases’. Researchers analysed over 400 press releases produced by UK Universities, as well as 600 associated news articles, for ‘exaggeration’ (defined as claims going beyond those in the peer reviewed paper).

The researchers found a direct correlation between exaggeration in academic press releases and journalistic exaggeration. The majority of news articles made ‘exaggerations’ when they were based on press releases that gave health advice to readers that didn’t follow from the study; made unjustified ‘causal claims’; or made inferences about humans from studies concerned with other animals.

In contrast, only 10-18% of media reports contained ‘exaggerations’ when based on ‘objective’ press releases.

In an editorial on the study, Dr. Ben Goldacre – a researcher fellow at the London School of Hygiene and Tropical Medicine – suggested that there is a need to achieve more accountability for poorly written scientific press releases. “All academic press releases should have named authors, including both the press officers involved and the individual named academics from the original academic paper.” He also called for press releases to be “treated as a part of the scientific publication, linked to the paper, referenced directly from the academic paper being promoted, and presented through existing infrastructure as online data appendices, in full view of peers.”



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January
17
 

Near enough is not good enough

The phrase “not completely brain dead”, like “not completely pregnant”, has a Monty Python-esque ring to it. But it is the way the Daily Mail described an alarming organ transplant incident in the German city of Bremen.

Doctors in a hospital in Bremen had already made an incision in the abdomen of a man who was presumed to be dead when they discovered that the deceased donor was still alive according to organ transplant protocols. The operation was immediately terminated – and the brain-damaged patient died. The incident is being investigated by the German Medical Association.

The Süddeutsche Zeitung (the source for the Daily Mail) was told that "it is quite possible that the man's brain was so damaged that he would not have been able to return to a normal life, but as lon