The outcome was expected, but overseas observers were astonished at the margin of victory. By a vote of 50 to 17, the Belgian Senate has approved euthanasia for children. When the bill finally passes – which now seems quite certain – there will be no age limit for choosing to die at the hands of Belgian doctor. The next step is a vote in the lower house, which will probably take place in May.
The conditions for euthanasia are vague. Children who are under 18 but who are of sound mind can request death if their situation is “medically hopeless” and if they are experiencing “unbearable physical suffering that within the foreseeable future will result in death."
Supporters of the bill have argued that there will only be about 10 or 15 cases each year. They contend that terminally-ill children are already being euthanased and it is better for the practice to be regulated. How will the doctor know if the child is of sound mind? He or she must be examined by a psychiatrist or psychologist. The parents or the legal guardian must also consent.
The debate raises the issue of something that is often taken for granted: is there really an ethical difference between a child and an adult?
In November 16 paediatricians urged lawmakers to approve the legislation in an open letter in the press. "Why deprive minors of this last possibility? Experience shows us that in cases of serious illness and imminent death, minors develop very quickly a great maturity, to the point where they are often better able to reflect and express themselves on life than healthy people."
This seems to be a consistent theme in the Belgian debate. One senator, Louis Ide, a Catholic and a conservative, explained why he voted for the bill in his blog, Gezondheidszorg. He argues that assessing mental competence by calendar age is an archaic standard. “Children” can drive, or can give testimony in divorce cases. The only relevant standard is a capacity to make sound decisions.
However, British barrister and medical ethicist Charles Foster has been especially critical about the issue of informed consent.
“Death, so far as we know, is terribly final. And if you’re opting for death, you need to be sure that you’ve got it right. This demands an understanding of many complex facts (such as prognosis – how your disease or condition is going to pan out – and your therapeutic and palliative options), and an evaluation of their significance. It’s hard for anyone; it’s likely to be impossible for children.
“There’s lots of evidence to show that when we find ourselves in the situations we have most feared (for instance severe disability), we find that those situations are nothing like as unbearable as we anticipated. When we are stripped of much, we value all the more what is left. Try explaining that to a child.”
German wants provide ‘fertility equality’ for all individuals: “Everyone has the right to parenthood and there should be no discrimination between a woman who wants to be a mother and a man who wants to be a father,” she said.
Amongst other changes, German wants to allow married men and women to seek fertility treatment with another individual without their spouse knowing.
The minister did not go as far as saying surrogates could be paid for their services.
Though German wants to make surrogacy more legally available, Israel is currently suffering from a shortage of surrogate mothers. From 2007 to 2012, 313 Israelis found surrogate mothers abroad, compared to only 228 in Israel. The imbalance has become even worse recently. In 2012, 126 went through the process abroad, while only 41 did so in Israel.
The American Civil Liberties Union (ACLU) is suing the US Catholic Bishops Conference (USCBC) for hampering the care of a pregnant woman in one of its hospitals. The ACLU claim that the USCBC code of conduct for hospitals – known as the Ethical and Religious Directives for Catholic Health Services – led to unnecessary “trauma and harm” for their client.
The woman at the center of the case is Tamesha Means, who attended Mercy Health in Muskegon, Michigan when she was 18 weeks pregnant. Her water had broken and she was in great pain. Her fetus had virtually no chance of surviving, according to medical experts who reviewed the case. Normally doctors would induce labor or surgically remove the fetus to reduce the mother’s chances of infection. But Means was not told of these options. After two days of strong pain, she miscarried the baby and it died shortly afterwards.
The ACLU claim that if Means had known of the alternative treatments she could have avoided the days of serious pain. They dismiss the argument that religious liberty overrides the need to inform patients of alternative treatments: “This isn’t about religious freedom, it’s about medical care,” said Louise Melling, deputy legal director of the ACLU.
President of the National Catholic Bioethics Centre John M. Haas has dismissed the claims as misguided. He said that in the medical case as described in the lawsuit, would appear to be a case where abortion would be allowed under the directives. "If that hospital had called us and said may we proceed in terms of starting labor…it's perfectly legitimate," to save the mother, said Haas.
He also pointed out to journalists that directive 27 of the code says the patient should be given "all reasonable information about the essential nature of the proposed treatment and its benefits; its risks, side-effects, consequences, and cost; and any reasonable and morally legitimate alternatives, including no treatment at all," in order to make informed decisions.
One of the recipients of this year’s Nobel Prize for Medicine has used it as a platform for a blistering attack on the whole system of publishing research in science and medicine.
Randy Schekman, a US biologist who received his prize in Stockholm on Tuesday, said his lab would no longer send research papers to the “luxury journals”, Nature, Cell and Science. Schekman works at the University of California, Berkeley, and is former editor-in-chief of Proceedings of the National Academy of Sciences.
In an op-ed in The Guardian, he makes several telling points.
The reputations of the big journals are inflated:
“These luxury journals are supposed to be the epitome of quality, publishing only the best research. Because funding and appointment panels often use place of publication as a proxy for quality of science, appearing in these titles often leads to grants and professorships. But the big journals' reputations are only partly warranted. While they publish many outstanding papers, they do not publish only outstanding papers. Neither are they the only publishers of outstanding research.”
The impact factor is a gimmick:
“Better papers, the theory goes, are cited more often, so better journals boast higher scores. Yet it is a deeply flawed measure, pursuing which has become an end in itself – and is as damaging to science as the bonus culture is to banking.”
The journals are too interested in making headlines:
“they accept papers that will make waves because they explore sexy subjects or make challenging claims… In extreme cases, the lure of the luxury journal can encourage the cutting of corners, and contribute to the escalating number of papers that are retracted as flawed or fraudulent.”
Schekman argues that the way forward is open-access journals which can be read by anyone. He edits one himself, eLife.
Pressure is mounting on legislators in Virginia to compensate victims of its forced sterilization policy in the early years of the last century. The neighboring state of North Carolina this year approved a $10 million compensation fund for surviving victims. Two Virginian delegates, from opposite sides of the political spectrum, are now calling on their legislature to act.
Republican Bob Marshall and Democrat Patrick Hope told reporters on Monday that they would move a bill next year to recompense survivors.
"You're not going to ever come close to compensating for their loss," said Hope. But, he added, it's a first step toward healing.
"It's horrible that we participated in this and became an example for the Third Reich," Marshall said.
Media outlets around the nation have expressed their resounding support for the move.
A number of important facts have come to light in the case of Alessandra Pacchieri, an Italian woman subject to a forced caesarean when visiting the UK, followed by the seizure of her child by child protection workers.
The judge concluded, based on what he called "clear" medical evidence, that the woman lacked the capacity to make the decision about the C-section herself, and so decided that it was in the interests of her health and the health of the baby that it be delivered by C-section.
From these facts it is not entirely clear that the C-section or taking of the child was justified (Lord Justice Munby, president of the family courts, is currently reviewing the decision). Nevertheless, it is clearly a far more complex case than initially suggested by the media.
Sometimes it's good to remind yourself that bioethicists are good guys to have around if your doctor is thinking about using you as a guinea pig for a novel medical treatment. For instance, they would have been useful after World War II when doctors in the US Veterans Administration lobotomized at least 1,900 military men (and a few women).
Lobotomies became less popular after the first major antipsychotic drug, Thorazine, became available in the mid-1950s. This revolutionised care for the mentally ill. But, before then, with so many patients suffering from “shell shock” or “battle fatigue”, military doctors resorted to the popular procedure. In 1949, António Egas Moniz, a Portuguese doctor, won the Nobel Prize for Medicine for developing the lobotomy. An American disciple, Walter Freeman, turned it into an assembly line technique. In the peak year, 1949, 5,000 lobotomies were performed in the US.
One of the villains is Dr Freeman. Although he was a psychiatrist, not a surgeon, he developed a technique which involved inserting an ice pick in patients’ eye sockets to access the brain. Sometimes he removed brain tissue for research. He worked without gloves or a mask. Even at the time, VA doctors questioned the brazenness of his cowboy techniques.
The families of the men were not well-informed of the outcome of the radical psychosurgery. “Many learned too late, however, that lobotomy could be a mixed blessing,” says the WSJ. “The operation might reduce a patient’s violence and angst, but it could also leave him forever scrubbed of personality and stripped of independence.” Many patients did not improve, ending up as docile hulks, like McMurphy, a patient in One Flew Over the Cuckoo’s Nest.
The Journal of Medical Ethics is constantly innovating in the selection and presentation of its material. The latest feature is “Author Meets Critics”, a series in which authors present the principal arguments of a recent book, and then respond to a handful of critics.
In its “on-line first” section the JME has just released concise precis of Unfit for the Future, a book about “moral bioenhancement” by Ingmar Persson and Julian Savulescu; Against Autonomy: Justifying Coercive Paternalism, by Sarah Conly; and a defence of Human dignity in bioethics and law, by medical ethicist and barrister Charles Foster.
BioEdge has covered all these ideas in one way or other in the past, but another authors takes a revolutionary and quite unfamiliar approach to the whole field of bioethics in his precis. As the very term suggests, bioethical discourse privileges bios, life. While death is inevitable, the preservation and enhancement of life is the foundation of most contemporary bioethics.
An American philosopher, James Stacey Taylor, the author of Death, Posthumous Harm, and Bioethics, takes issue with this. He is an Epicurean and argues that “That death is not a harm to the person who dies, and that persons can neither be harmed nor wronged by events that occur after their deaths”. This has very direct consequences on issues like suicide and euthanasia, assisted posthumous reproduction, medical research on the dead, medical confidentiality and organ procurement.
A genetic test for breast cancer shows that a patient is not at risk. But the results also reveal that there is an elevated risk of heart disease. What do the researchers owe the participant? What does the participant want to know? This is an increasingly common scenario. This week the Presidential Commission for the Study of Bioethical Issues released a report on so-called "incidental findings", Anticipate and Communicate.
“How clinicians, researchers and direct-to-consumer companies manage incidental and secondary findings will likely touch all of us who seek medical care, participate in research, or send a cheek swab to a company for a peek at our own genetic make-up,” said Amy Gutmann, the chair of the Commission. “The reality is that we might find out more than we bargained for. Yet practitioners are getting conflicting advice about how to manage such findings across contexts and modalities such as genetics, imaging, and biological specimen testing.”
Incidental findings – whether or not we can anticipate them – give rise to a wide range of practical and ethical challenges for recipients and practitioners. Emerging medical technologies, changing cost structures, and evolving medical practice have increased remarkably the likelihood of discovering incidental findings in the clinic, research, and commercial direct-to-consumer contexts. Such findings can be lifesaving, but also can lead to uncertainty and distress if they are unexpected or identify conditions for which no effective treatment is available.
“For every setting and type of test or procedure, when it comes to incidental findings, the Bioethics Commission recommends anticipating and communicating,” Gutmann said. “All practitioners should anticipate and plan for incidental findings so that patients, research participants, and consumers are informed ahead of time about what to expect and so that incidental findings are aptly communicated if they are found. The best way forward is shared decision-making between practitioners and potential recipients.”
Sensitive and unexpected results in the direct-to-consumer context merit many of the same ethical considerations. Secondary findings raise related issues: these discoveries are also not the primary target of the testing but, unlike incidental findings, they are actively sought.
Currently, there are no consistent guidelines for how we best manage these discoveries. Recent reports show how unsettled the issue of incidental findings is: for example, one report recommended scans for early cancer screening; another report, released the next month, suggested early scans can cause more harm than good by detecting too many problems, thus leading to overtreatment.
Earlier this year the American College of Medical Genetics and Genomics (ACMG) made an abrupt and controversial change of policy and decided that it would be unethical not to disclose all the incidental findings, even if a patient does not want to know. In other words, the patient’s autonomy comes second.
“More information is not always better. Incidental findings might, but do not always, have important, actionable implications for our health and emotional as well as physical wellbeing. It would be rash—both ethically and practically speaking—to conclude that everything that can be sought should be sought, and reported, in all contexts,” Gutmann said.
In 1999, Scheper-Hughes helped found the Berkeley Organs Watch project. It monitors the organ-transplant trade for abuses among the transnational networks that connect patients, transplant surgeons, brokers, medical facilities and live donors, who often live in the poorest parts of the world.
“When I began the Organs Watch project, it was heretical to suggest that human trafficking for organs was not just a hyperbolic metaphor of human exploitation, but was actually happening in many parts of the world,” Scheper-Hughes said in her acceptance remarks.
But the project generated international headlines, particularly as Scheper-Hughes has called for more accountability from the medical profession in the field of medical anthropology. She also has been asked to testify before national and international governmental and medical panels, and has helped law enforcement agencies uncover illicit organs trafficking around the globe.
In recent years, Scheper-Hughes has advised the European Union, the United Nations and the Human Trafficking Office of the World Health Organization. She has also testified before Congress, the Council of Europe and the British House of Lords. In addition, she has consulted on several documentary as well as commercial films exploring organ trafficking.
In accepting the award, she acknowledged that the complex social issues that anthropologists explore often have no single, simple solution, and one answer can prompt a new problem.
“So, yes,” Scheper-Hughes said in her speech, “I did help interrupt kidney trafficking in Moldova, only to have the international brokers use my Organs Watch web site … to set up a robust scheme in illicit transplants using Afro-Brazilian men from the slums of Recife to service Israeli and European transplant tourists to South African hospitals …
"And, yes, I contributed to the ban on the use of executed prisoners in China as organ suppliers, only to learn that new organ suppliers could be found in China among rural village girls and Vietnamese immigrants.”