English barrister and medical ethicist Charles Foster has penned defence of “human dignity” as the foundation of bioethics in the Cambridge Quarterly of Healthcare Ethics. He believes that it is more adequate than the reigning view that autonomy is its fundamental principle. In particular dignity does a far better job of explaining why body parts or patients in a vegetative state deserve respect.
Foster is well aware that the concept of dignity has weaknesses:
Dignity has a smug tendency to rest on its laurels. Its advocates have often responded to criticism of the use of dignity by philosophical name-calling—along the lines of “You don’t like dignity, and therefore you must be a Nazi/communist/utilitarian/shallow reductionist.” That’s not argument. It rightly produces derision from the dignity deniers. They tend to respond in kind, saying words to the effect of “You’re a credulous, theologically contaminated mystic.” And so it goes on. A lot of the literature on dignity is comprised of these sorts of exchanges. It is not amusing for long, and not productive at all.
However, autonomy is “hardly more satisfactory and less question-begging”. In particular, it fails to take into account the web of relationships in which we all exist.
What is dignity? “Dignity is about being human well. A dignity-enhancing measure is a humanizing measure. There are things that are objectively humanizing and things that are not.” Good things include health and companionship; bad things include isolation and arsenic.
Even if human dignity sounds airy-fairy to those of a utilitarian cast of mind, Foster points out that it has already been enshrined in law in the European Convention on Human Rights:
Article 8(1) provides that “(1) everyone has the right to respect for his private and family life, his home and his correspondence.” But this right is not absolute. …
It is now clear that Article 8 is the natural home of dignity. It is a rather tense home. The space is shared with autonomy, and there are sometimes silent, icy breakfasts and sometimes shouting matches. Also the landlords (the Strasbourg court) won’t leave the place alone. They are always redecorating and adding on extensions. But there is no danger of dignity being ousted. Indeed, it now holds, with autonomy, a perpetual joint tenancy. It used to have a bare license, and autonomy kept it in a shabby spare room. Dignity is here to stay, and its main address is Article 8.
Foster is clever debater and stylish writer (unlike most bioethicists). This is an essay which is well worth reading as a defence of an often maligned concept.
Wrapped into US President Barack Obama’s speech on the threat posed by ISIS in the Middle East was a commitment to send the US Army to West Africa to contain the Ebola epidemic. “It is America – our scientists, our doctors, our know-how – that can help contain and cure the outbreak of Ebola,” he said.
The haemorrhagic fever, which has a fatality rate of between 50 and 90%, has spread from Guinea to Sierra Leone, Liberia, Democratic Republic of Congo and Nigeria. Over 2,000 people have died already and some experts believe that this could increase exponentially.
"The US Military is uniquely poised to help with this disease," says Timothy Flanigan, an infectious disease researcher at Brown University, told NPR from Monrovia. "We've trained for it, we've got the logistics, we've got the support and we have the matériel."
However, Obama has only allocated US$88 million for the mission -- $58 million for production, development and research of Ebola therapies, and $30 million to the Centers for Disease Control and Prevention helping on the ground in Africa. How far will $30 million go?
Dr Flanigan was disheartened by the response. The military is planning to send only a $22 million, 25-bed field hospital. “It's not going to make any dent in Ebola treatment for the people of Liberia,” he says. “It's such a small number of beds and they may well be directed toward non-Liberians."
Furthermore, containing the epidemic and treating the sick is immensely labour-intensive. The World Health Organization estimates that about 760 foreign volunteers will be needed over the next six months, when the epidemic may begin to wane. Another 12,900 workers must be recruited from the affected countries. It takes about 200 to 250 healthcare workers to treat for 80 Ebola patients at one centre. The ratio is so high partly because people can only work in the protective suits for an hour.
As Roll Call, a US politics site, put it, “the worst epidemic in the four-decade recorded history of the disease has made the challenge one of manpower rather than financial resources.”
Médecins Sans Frontières (Doctors Without Borders) is advertising frantically for international volunteers, in addition to the 210 it has already deployed. The US government’s response will help, says its spokesman, Jason Cone, but more is needed. Some health workers in the affected countries refuse to work unless they receive protective gear and their salaries.
Some experts are very pessimistic. Jonas Schmidt-Chanasit, of the Bernhard Nocht Institute for Tropical Medicine in Hamburg, told Deutsche Welle that the battle has already been lost in Liberia and Sierra Leone. He believes that the epidemic will burn itself out by infecting more or less everyone and half the population will die. (The WHO refused to comment on this.)
Given the scale of the problem, there is no possibility whatsoever of defeating this epidemic with drugs. Hence bioethical commentary on the issue has shifted away from the ethics of the “compassionate use” of experimental drugs to public health issues.
“Did we stress that WHO’s choice of topic and the supposed urgency of its recommendation to provide access to experimental agents in Ebola regions amounted to pointless grandstanding in the face of a pandemic that requires a public health response, and not the tinkering with experimental agents? Some of us did, but it didn’t stop most of us from entertaining questions on the ethics of who should get experimental agents, whether it was ok that white religious activists with a health care background were prioritized over local dying health workers, and other reportedly important questions. In the rush to be seen to do something the WHO managed to convene said meeting without a single representative from a country affected directly by Ebola.”
It’s all very well to sit in an armchair and bloviate about Ebola. If you are a doctor or a nurse or a hospital cleaner with a dying patient in the next room, it is an altogether different question. If you help the poor soul, you and your family could die.
As one Liberian nurse told Associated Press, “We are not equipped to face the situation ... When you go through this and return home, you lie in bed asking yourself: I am still safe? Or I have contracted the disease?”
“In the absence of clear guidance, healthcare workers face a moral dilemma. Their conscience urges them to treat all patients, but a convergence of failed health system factors, the danger to life, emotional considerations like danger posed to family and friends, and the absence of commensurate compensation for engaging in such high risk service can make following one's conscience costly.”
Traditionally, public health ethics has focused on the rights of the public. But the authors point out that healthcare workers have also have a right to be protected. If the government is incapable of keeping htem safe, there is not unconditional obligation to give care.
“Requiring healthcare workers to provide care to patients with EVD puts undue burden on them. Since the principle of justice requires fair distribution of benefits and risks, it is only fair that affected countries make arrangements to adequately compensate healthcare workers who become infected in the course of duty.”
Oscar Pistorius is set to be convicted of negligence but not murder, following a six-month trial obsessively followed by the international media.
Judge Thokozile Masipa found that prosecutors had failed to prove beyond reasonable doubt that Pistorius intended to kill his girlfriend Reeva Steenkamp. “There just aren’t enough facts to support such a finding”, she said. She did, however, find that Pistorius had been negligent in firing four shots into the bathroom of his house. “I am of the view that the accused acted too hastily and used excessive force,” Ms. Masipa said. “It is clear that his conduct was negligent.”
Judge Masipa rejected Pistorius defence that disability-induced anxiety had led him to overreact to the situation. "The accused isn't unique in this respect. Women, children the elderly and all those with limited mobility would fall under the same category," Ms. Masipa said, one of several admonishments she delivered to Mr. Pistorius. "Would it be reasonable if without further ado they armed themselves with firearms? I don't think so”.
Late in the trial medical expert Wayne Derman testified that Pistorius was a complex individual suffering from “stress and anxiety”. “You have a paradox of an individual who is supremely able and an individual who is significantly disabled”, he told the court. Derman claimed “the accused lacked criminal capacity at the time he fired the shots because of an involuntary, reflexive response.”
Ms. Masipa said she disagreed with Derman’s submission. “The accused clearly wanted to use the firearm”, she said.
Disability rights groups have criticised the Pistorius’ defence team. The president of the (US based) National Organisation on Disability described Pistorius’ disability defence as “exploitation”.
Smith suggests that scientists found guilty of misconduct “can’t be trusted” and yet many “have simply carried on with their careers.”
“Science itself has failed to adequately deal with misconduct”, he said.
Smith argues that scientific fraud causes serious social harm, citing as an example disgraced autism researcher Dr. Andrew Wakefield. Wakefield’s now discredited study on the link between vaccination and autism caused a massive drop in the number of childhood vaccinations.
Smith also argues that the nature of science means scientists should be held to a higher standard than the general public.
“The temptation to ignore, undermine, or even falsify the offending data is huge. Only those with the highest levels of honesty can accept, let alone be delighted, when data destroy their theories.”
Smith's comments echo the remarks of Dr Zulfiqar Bhutta, Robert Harding Chair in global child health and policy and Co-Director of the Centre for Global Child Health at the Hospital for Sick Children, Toronto, in a BMJ interview last year. Dr Bhutta argued that current sanctions against fraud are insufficient. "additional deterrence through punitive measures such as criminal proceedings should be added to the repertoire of measures available", he said.
Bodies Revealed, an exhibition open in Niagara Falls, contains 20 preserved full human bodies, displayed in various positions, as well as 200 specimens of body parts. The specimens are preserved using a technique know as ‘plastination’, in which water and fat from the body are replaced with reactive resins and polymers.
Choose Humanity, a group that aims to draw attention to human rights abuses in China, claims that the bodies may come from Chinese prisons without individual consent. “We’re concerned that the presenter of these exhibitions does not have any form of consent whatsoever to show these bodies,” said Joel Chipkar, spokesman for Choose Humanity. “If these bodies do not have consent to be shown, these bodies are being shown illegally in Canada.”
Premier Exhibitions, the owners of the exhibition, offered no response to the complaint.
However, a disclaimer on their website confirms the remains are from Chinese citizens or residents “originally received” by Chinese police. “The Chinese Bureau of Police may receive bodies from Chinese prisons. Premier cannot independently verify that the human remains you are viewing are not those of persons who were incarcerated in Chinese prisons,” the disclaimer states. “Premier relies solely on the representations of its Chinese partners and cannot independently verify that they do not belong to persons executed while incarcerated in Chinese prisons.”
Joel Etienne, a lawyer representing Choose Humanity, believes there may be a criminal offence related to causing an indignity to a body. He has requested that an inquiry be conducted and that authorities stop the bodies from leaving Canada.
A new Israeli film attempts to offer a humorous look at euthanasia. The Farewell Party, directed by young auteurs Sharon Maymon and Tal Granit, is a dark comedy about a group of Jerusalem retirement-home residents who create a euthanasia machine to put a dying friend out of his misery — and then face a moral dilemma when others come seeking the same service. Maymon and Granit say that want to teach people how to “laugh about death”.
“We really believed in this movie, what it says. It's very important for us to raise these questions”, Maymon said.
The film has met with significant criticism both within Israel and abroad, and it has been difficult for its producers to find distributors. Nevertheless, it received positive reviews at the Venice Film Festival and has been selected for screening at the 2014 Toronto Film Festival.
Women are putting their lives in danger by purchasing illegal IVF drugs from the online auction site EBay. Drugs can be bought off the website for a third of the normal market price, and many desperate women are turning to it as a last resort.
The fertility drugs include brand names Suprecur, Cetrotide and Menopur. They are hormone treatments used to stimulate the ovary to produce more eggs to increase fertility and as part of IVF procedures.
One British woman, 26-year-old Lorraine Davy, almost died after taking the ovulation stimulation drug Clomid. “I got rushed into A&E and they did an ultrasound and the doctor said I had a massive cyst on my ovaries”.
The British Medicines and Healthcare Products Regulatory Agency (MHRA) has contacted EBay to have the drugs removed from auction.
The United Kingdom is debating the merits of “three-parent embryos” to alleviate the burden of serious mitochondrial diseases. Scientists have reassured the public that this procedure will produce healthy children.
These assertions are largely speculative. However, something similar has happened before. About 30 children conceived from this technique have been born, 17 of them from an American IVF clinic between 1996 and 2002, when US government authorities put a stop to it. At the time the Saint Barnabas Medical Center, in New Jersey, called it “cytoplasmic transfer” and billed it as a way of jump-starting tired eggs. Twelve years after the US Food and Drug Administration recommended a retrospective study to see how these children have fared, the clinic is finally doing one.
Thirteen-year-old Alana Saarinen (pictured above with her parents) is one of those children. A godsend to her mother, who had a history of infertility, she is healthy, normal and cheerful. But her parents were never contacted about her progress. “I wish someone would, so they could see how healthy Alana is,” her mother told the London Telegraph.
The data will be of great relevance to the debate in the UK, although it will probably not be available before Parliament votes.
Jacques Cohen, the scientist who carried out the cytoplasmic transfer on the 17 IVF babies told the UK newspaper The Independent that no follow-up on the children had ever been done, despite the highly experimental and risky nature of the technique. “The current follow-up study is ongoing and results will be made available in a medical journal,” Dr Cohen said, although he is no longer working at St Barnabas.
Cytoplasmic transfer does differ from mitochondrial transfer. In the former, the mitochondria from both eggs are mixed together. In the latter, only the donor egg’s mitochondria are used. What little is known about cytoplasmic transfer is not promising. A report from the Food and Drug Administration in 2002 pointed out that there had been two instances of Turner Syndrome (one miscarried and one aborted) amongst 30 pregnancies. A paper by Cohen published in 2001 noted that an 18-month-old child had been diagnosed with a “pervasive developmental disorder”.
He points out that despite strong support from UK scientists and bioethicists and generally favourable treatment in the media, no other country in the world has authorised modification of the human genome. “Do we really want to become a rogue state in terms of bioethics?” he asks.
He also argues that the procedure “cures” no one. It simply prevents the birth of handicapped children. But this comes at the cost of destroying a human embryo for its “useful parts”. “There is no way that that can be considered ethical,” he says.
“… we are dealing with entirely separate issues when we talk about genetically modified food and what we are dealing with now, which is genetically modified people. We have only in the past 100 years come to terms with the debilitating, restrictive and oppressive results of centuries of racism buttressed by pseudo-scientific notions that have since been proved entirely false. How much more of a problem will we be confronted with when humanity is divided between the modified and the unmodified?
“… The mitochondria that contain DNA interact with the nucleus and many scientists therefore believe that they contribute material to the identity of an individual. Bioethicists have up until this point expressed almost universal consensus on germ-line genetic modification of our fellow humans, rejecting it as grievously immoral and completely unethical.
“The consensus is worth pointing out as we must know what the proponents of mitochondrial transfer are asking us to dissent from. They are asking us to dissent from opinion in every other country in the world. In this age of globalisation, we will be divorcing ourselves from the entire community of nations in terms of bioethics. Do we really want to become a rogue state in terms of bioethics?
“No one can deny the debilitations and hardships that these diseases cause. No one is seeking to downplay that suffering, but this is not about a cure. This will neither heal nor cure a single human being suffering from these diseases.
“What is worse, when we talk about pronuclear transfer, is that that effectively requires the creation of human beings for the sole purpose of harvesting their useful parts. Is that really the sort of society in which we wish to live, in which persons—individuals—are created, their parts harvested and then destroyed, merely to provide for other human beings? There is no way that that can be considered ethical, whether in terms of purely rational deductive natural law, or by the system of Christian ethics on which we in this country have traditionally relied.”
Naturally, this controversial issue had strong defenders as well. Chi Onwurah, MP for Newcastle upon Tyne Central, presented the views of scientists at the University of Newcastle, who are passionate promoters of the technique. In her view, mitochondrial DNA represents only a tiny sliver of our genetic endowment, so small that it is not worth worrying about. She also used a slippery slope argument: if gestational surrogacy, which involves three parents, is already legal, how could the government possibly object to mitochondrial transfer?
"The embryo would carry just 13 out of 23,000, or 0.056%, of the genetic material from the mitochondrial donor. As the right hon. Member for Havant (Mr Willetts) said, it is not the nuclear DNA, so the child’s appearance, personality and other features are not affected. In Britain, the egg donation and surrogacy principle, whereby more than two parents can contribute biologically to the birth of a child, is already recognised. Medical procedures that introduce a donor’s biological material are also long accepted. The headlines, such as the BBC’s recent “Mum plus dad plus mum”, are not only sloppy and sensational, but unscientific. I would like the BBC’s other programme, “More or Less”, to comment on whether giving 0.056% of genetic material and 0% of nuclear DNA really constitutes being called “mum”.
"The UK is carrying out pioneering research on mitochondrial diseases. This country has the opportunity to be at the leading edge of the world in preventing such terrible diseases. It has taken us years to get to this point. Never before has a technique had such rigorous investigation, and ethical and scientific analysis. It is therefore incredibly important that progress does not stall."