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