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.”
The number of cases of Alzheimer’s disease is set to treble by 2050, according to the peak dementia research group, Alzheimer’s Disease International (ADI). ADI, which will brief G8 nations at a special conference in London on Wednesday, estimates that there will be 135 million people living with dementia in 2050, up from the current number of 76 million. It is calling on governments to develop comprehensive policies to prepare for the dramatic increase:
“The absence of dementia public policy renders governments woefully unprepared for the dementia epidemic and there is an urgent need for a collaborative, global action plan for governments, industry and non-profit organisations like Alzheimer associations.”
There are also concerns about ability of poorer countries to deal with the epidemic. According to the briefing, over two-thirds (71%) of people with dementia will be living in low- and middle-income countries. The researchers stress that while funding for dementia research is crucial, there is an equally important need for good quality care and support for caregivers. Priority must also be given to policymaking, development of health and social care services, and health systems.
Next year marks the 50th anniversary of the Declaration of Helsinki, the benchmark for ethical medical research on subjects. To mark the occasion, the World Medical Association, which is responsible for updating the document, has issued a seventh revision. The WMA president, Margaret Mungherera, President of the WMA, explains the scope of the changes:
"We have spent two years consulting our national medical association members, outside experts and the public and we are satisfied that today we have a Declaration that requires greater transparency about medical research, greater accountability and increased patient safety. The changes also place more obligations on the sponsors of research, on the researchers themselves and on host governments to protect research subjects."
The origins of the Helsinki Declaration lie in the atrocities by Nazi doctors during World War II. In the wake of the war crimes trials, the 1947 Nuremberg Code set down ten conditions for research to be ethical. This was the first standard of human research ethics. However, this needed to be refined to cover the ever-expanding need to test medical advances on human subjects.
The result was the 1964 Declaration of Helsinki. The first edition contained 11 articles and 713 words. With constant revision, it has grown to 37 articles and 2,240 words which are read and glossed like a Biblical text.
One of the leading US experts on research ethics, Dr Ezechiel Emanuel, of the University of Pennsylvania, has been highly critical of the new draft in articles in JAMA and The Lancet. He claims that:
"there are nine distinct problems with the current version of the Declaration of Helsinki: it has an incoherent structure; it confuses medical care and research; it addresses the wrong audience; it makes extraneous ethical provisions; it includes contradictions; it contains unnecessary repetitions; it uses multiple and poor phrasings; it includes excessive details; and it makes unjustified, unethical recommendations."
In addition, he says, constant revision "undermine the legitimacy of the Declaration". A statement of ethical principles should be unchanging; otherwise it makes researchers think that they are not truly authoritative.
Saudi couples who are unable to have children are employing surrogate mothers in Asia and Europe even though surrogacy has been condemned by the country's Islamic Jurisprudence Council. An article in the Arab News did not estimate how many couples have done this. However, a number of doctors favour a more liberal interpretation of the law.
Dr Samir Abbas, a member of the Saudi Society of Gynaecology and Obstetrics, says “Such a phenomenon should not be treated as taboo, since the mechanism of food being fed to the fetus through the umbilical cord is akin to the act of a woman breastfeeding another person’s child, which is permissible in Islam.” Some commentators on the story also suggested that the husband take a second wife if the first is unable to bear a child.
In China surrogacy is also illegal, so some couples are going to US surrogacy agencies. The take-away cost of a child for them is between US$120,000 and $140,000. But if the child is born on American soil, it is constitutionally guaranteed US citizenship. This may come in handy for the commissioning parents as a way of getting a US education for the child or as a path to US residency for them. Surrogacy also allows parents to choose the gender of their baby and gives them a chance at having a second child in country which still enforces the one-child policy.
The search for UK volunteers willing to ditch privacy and donate their genome and health data to science has begun with the launch of the Personal Genome Project UK. The organisers hope to find 100,000 donors.
PGP-UK aims to offer every participant analysis of their genome, as part of a novel open consent protocol, enabling genomic data to be linked to medical and health records to create an information-rich resource that is made available under open access, allowing free and unrestricted access.
"Donating your genome and health data to science is a great way to enable advances in the understanding of human genetics, biology, and health," said Professor Stephan Beck, the director of the project.
Surrendering the right to genetic privacy is a novel development, especially at a time when countries all around the world are worried about keeping their data private from Google and security agencies. Entry to the project requires a thorough understanding of the risk of someone linking an on-line genome with a real person. "This is not for everyone," Jane Kaye, director of the Centre for Law, Health and Emerging Technologies at Oxford University, told The Guardian. "We are talking about information altruists here."
The US was the first country to roll out an open-source genome project. The genetic records of about 700 people have been published so far, but thousands have applied.
The program has its critics. "To put 100,000 genomes on the web so anyone can download them and use them is more than creepy," says Ross Anderson, a computer security expert at Cambridge University. "I wouldn't dream of doing it. You don't know where that's going to get to, we don't know enough about this yet.
Helen Wallace, of GeneWatch UK, also expressed reservations. "GeneWatch UK's view is that people should think twice before agreeing to share their genome openly. Remember your DNA contains a unique genetic code which can be used to track you and identify your relatives. Stored online it will be accessible to police, security and border agencies based in any country," she said.
"This project is sponsored by companies who are lobbying to expand the market for whole genome sequencing and open this data up to commercial exploitation. Genes are poor predictors of most diseases in most people but companies from Google to the private healthcare industry want to data-mine this information for personalised marketing, massively expanding the market for drugs sold to healthy people."