FROM THE EDITOR
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|This week in BioEdge|
The most famous clinical trial of all time was Edward Jenner’s experiment with a smallpox vaccine. He had a hunch that exposure to cowpox would protect humans against smallpox. So he immunised James Phipps, the son of his gardener, and then deliberately infected him with smallpox after six weeks and later on as well, another 20 times. “Poor Phipps” did not die, at least not of smallpox, and his cooperation saved hundreds of millions of lives.
This is a milestone in modern medicine, but Jenner’s experiment would not pass an ethics review nowadays. For one thing, Phipps hardly gave his informed consent. However, unknown to most people, Jenner’s methodology is still used. Healthy people are being infected and observed to see whether they become ill (or die). Nowadays the technique is called a Human Challenge Study (HCS).
An article this week in Science profiled some of the leading figures in HCS in the United States. Volunteers are being deliberately infected with infected with malaria, influenza, shigella, dengue, norovirus, tuberculosis, rhinovirus, Escherichia coli, typhoid, giardia, and campylobacter. Researchers try to make the virus as attenuated as possible to minimise the danger and then treat the illness as quickly and effectively as possible.
In many ways HCS is better than standard clinical trials. It is faster, cheaper and can give useful information about potential side effects of treatments.
HCS have been in a bad odour for decades, largely because of Nazi experiments on prisoners in concentration camps. The world was outraged and some of the doctors were hanged, but in the US similar experiments were carried out on prisoners, without their consent. However, researchers like Levine insist that well-regulated, ethical HCS is possible – and is desperately needed.
What about volunteers? Astonishingly HCS researchers do not find it difficult to recruit subjects even for exotic diseases like cholera or dengue fever.
At least one company specialises in conducting HCS trials, hVIVO, a London-based firm. Its “Flu Camp” website tells potential volunteers that they can earn up to £3,450 Pounds by working 10 to 14 days and living in a quarantined hotel.
Commentators have clashed over the US Supreme Court’s decision not rule on a case involving the forced provision of contraceptives by Catholic order Little Sisters of the Poor.
On May 16 SCOTUS announced, in a unanimous decision, that it would not decide the case on its merits but instead sent the case back down to the lower courts for opposing parties to work out a compromise. The court said that in the course of litigation both parties had clarified their position and that they should be able to “arrive at an approach”.
Supporters of the plaintiffs saw the decision as a victory.
Bill McGurn of the Wall Street Journal suggested that the case represented a direct attack on religious groups in society:
“In short, the Obama administration’s goal was not just getting contraceptives to women. It was also to do so in a way designed to force religious groups such as the Little Sisters to cry “uncle.””
But advocates of the government’s contraceptive mandate stridently criticised the decision. New York Times journalist Linda Greenhouse exhorted the federal government to continue to the fight against the plaintiffs:
“…it’s time for the administration and its supporters to recapture the narrative and make clear to a confused public that this is not a case about nuns. It’s a case about women who should not, by reason of their particular employment, have to forfeit the right to comprehensive health care that the law makes available to other women in the work force. Wishful thinking, perhaps, but an urgent task.”
Writing in Harvard’s Petrie-Flom Center blog, Greg Lipper – Senior Litigation Counsel Americans United for the Separation of Church and State – said that “the one-track focus on the Little Sisters overlooks the tens of thousands of women affected by these cases and who risk losing the contraceptive coverage to which they’re entitled by law.”
Doctors have clear ethical obligations to patients in an end-of-life situation. But what if those patients don’t realise they’re at the end of their lives?
A new study by US researchers suggests that advanced cancer patients have a very poor understanding of their own condition, and that they are typically in need of regular updates on their prognosis from doctors.
Dr. Holly G. Prigerson of New York Presbyterian Hospital worked with a team of three researchers to investigate how much terminal cancer patients understand about their own illness. The team interviewed 178 patients with advanced cancers whom oncologists expected to die within 6 months. Illness understanding scores were taken based on the patient’s acknowledgement of their terminal and advanced condition, and their expectation that they would live months instead of years. The results, published in The Journal of Clinical Oncology on Monday, were quite alarming.
“Results of this study demonstrate how poorly patients with advanced cancer understand their prognoses and how effective recent prognostic discussions are to improve illness understanding by patients… A small minority [5%] of patients accurately, and completely, understood the gravity of their illnesses…”
The authors observed that there is a need for doctors to provide patients with regular updates on their condition:
“These results highlight the need for timely (ie, current) prognostic disclosures to terminally ill patients who meet the criteria used for this study. The results also suggest that oncologists should discuss prognosis on an ongoing basis, and as frequently as appropriate, with their terminally ill patients. If this occurred, patients would likely have better illness understanding and, thus, make more informed decisions about their end-of-life care.”
Prigerson suggested that part of the phenomenon could be attributed to patient’s desire not to know about their condition.
"Our point is a lot of them don’t want to know, but they need to know basic information about the disease and illness and treatment options," she told ABC News.
“It’s a difficult topic,” said Prigerson. “Have patients understand that, if they are being offered treatment, it’s not a cure and they really have months, not years, to live.”
Dr. Barbara Daly, the director of the clinical ethics program at University Hospitals Case Medical Center, said that some doctors speak in medical terms that can be confusing for a patient.
“It takes a high level of skill to talk to people ... to present it in a way where it’s understandable," she said. "Doctors ... they literally forget how to talk like a normal person.”
In a landmark decision, the High Court in the UK has ruled that it is discriminatory to prevent single men or women from becoming the parents of babies born to surrogate mothers. The government will probably have to update its legislation to make it compatible with the ruling.
Until now, only couples in a stable relationship could become parents of a child born to a surrogate mother. Single people could adopt children, but they were not automatically entitled to be regarded as a parent if their child was born to a surrogate.
In this case an unnamed man used his sperm, a donor egg and a surrogate mother in Minnesota to create a child, who is called “Z” in court documents. But when he brought the baby back to the UK, he was not regarded as a parent, but rather the surrogate mother. (Ironically, in the US, the surrogate mother has no legal status.) So Z was made a ward of the court, with custody awarded to his father, a situation which will now change.
The solicitor for Z’s father, Natalie Gamble, commented: “The UK has a proud tradition of taking a progressive approach to assisted reproduction and non-traditional families, and the current surrogacy laws are a glaring anomaly which fail to uphold our most fundamental values of safeguarding children's welfare.”
The government did not contest Z’s father’s case and admitted to the court that the law had breached human rights legislation, was discriminatory against single parents and needed to be changed.
The decision was severely criticised by people who interpreted it as an attack on the traditional family. A Labour MP and former Minister Frank Field told The Mail on Sunday: “In all these decisions, the natural rights of children get overlooked. Parenting is a huge job and it’s about time that children are put centre stage, not selfish adults.”
Family policy analyst Jill Kirby commented: “This judgment undermines the traditional family and the child’s needs – the evidence shows that children will thrive much better with two parents caring for them. The Government seems to have abandoned the idea of promoting stronger families.”
Here’s an interesting promotional video for a Ukranian surrogacy clinic, BioTexCom. The company’s website advertises in Ukranian, Chinese, Italian, French, English, German, Spanish, Arabic and Romanian, which gives an idea of the breadth of its market. The promotional blurb declares, “There is no absolute infertility! We treat even the most hopeless infertility cases.”
BioTexCom is the epitome of commercial,not altruistic, surrogacy. There are three levels of service: economy (29,900 Euros), standard (39,900 Euros), and VIP (49,900 Euros). The “standard” service offers pre-implantation genetic diagnosis of embryos, a 4-hour babysitter, paediatric consultation, a hotel and gourmet lunches. For “the most fastidious customers” who enrol for the VIP package there is limousine transport, a 9am-6pm babysitter and on-call paediatric advice. Its marketing on the web and social media is professional and energetic.
BioTexCom’s donors are “healthy, attractive and educated women”. Only two out of ten volunteers pass its rigorous tests. The outcome is “long-awaited happiness of parenthood … Save your money and get quality medical service.”
Sir Venki Ramakrishnan / Andy Hall for the Observer
The new president of the Royal Society, the most prestigious body of scientists in the UK, who is also the 2009 Nobel laureate in chemistry, says that a debate is needed about germline modification.
Sir Venki Ramakrishnan says that genetic engineering has great potential for curing genetic diseases and that society must weigh up the risks and benefits.
In an interview with the Guardian, Sir Venki took a broadly positive view of germline modification, even though it is currently banned in the UK.
“There is great potential in germline therapy. There are clearly diseases that you could help by editing the germline. This is a case of a new technology where there are significant potential benefits, but also significant ethical implications.”
However, he believes that it needs to be studied thoroughly to get a consensus.
“It’s definitely a major step, there’s no getting around that. That’s why it’s important to really slow down and not rush any decisions. What we need is a diverse and transparent group of people to really come together and get to grips with how do we go about using this tool and are there red lines. They may well decide there are red lines we shouldn’t cross.”
- See more at: http://www.bioedge.org/bioethics/we-need-debate-on-germline-modification-says-leading-uk-scientist/11891#sthash.VQzR0UR7.dpuf
A protest against sexual violence in Jakarta earlier this month.
Chemical castration will be a sentencing option for judge in Indonesia. President Joko Widodo has signed a decree authorizing this penalty for convicted child sex offenders. Those who have been released on parole must wear electronic monitoring devices.
The announcement follows outrage over the gang rape of a 14-year-old girl in Sumatra when she was on her way home from school. Mr Joko said that:
“The inclusion of such an amendment will provide space for the judge to decide severe punishments as a deterrent effect on perpetrators”.
“These crimes have undermined the development of children, and these crimes have disturbed our sense of peace, security and public order. So, we will handle it in an extraordinary way.”
Chemical castration is an increasingly popular response to sexual abuse around the world. However, it is a controversial remedy.
“Protecting children from sexual abuse requires a complex and carefully calibrated set of responses, including an effective social services system, school-based efforts to prevent and detect abuse, treatment services for people at risk of abusing children and criminal justice measures that focus on prevention,” Heather Barr, of Human Rights Watch, told the New York Times. “Chemical castration on its own addresses none of these needs and medical interventions should be used, if at all, only as part of a skilled treatment program, not as a punishment.”
"Chemical castration is not the solution," Rahayu Saraswati Djojohadikusumo, a member of the national assembly, told a press conference: "in most cases, pedophiles are not purely driven by sexual desire, but by power and dominance”. She said that chemical castration may temporarily dampen sexual arousal, but offenders will find other ways to exert power.
Insanity can be a legitimate defence in some criminal cases. But a team of US researchers are questioning whether criminals motivated by extreme views are of necessity insane.
In a paper recently published in the Journal of the American Academy of Psychiatrist and the Law, researchers from the University of Missouri argue that in some cases criminals should be said to have an “extreme overvalued belief” rather than being declared mentally ill.
Focusing specifically on the case of Norwegian mass murderer Anders Breivik, the researchers argue that extreme beliefs need not entail psychotic disorder. “… some people without psychotic mental illness feel so strongly about their beliefs that they take extreme actions.”, lead author Tahir Rahman said in an interview. “Our suggested term for criminally violent behavior when psychosis can be ruled out is ‘extreme overvalued belief.’”
The authors of the study draw upon the work of German neuropsychiatrist Carl Wernicke when developing this notion. When trying to develop subtlety in diagnosis of his patients, Wernicke proposed the concept of überwertige Idee (overvalued idea). The idea has lately received increased attention, particularly as a way to describe ideological factors at play in terrorism in the post 9/11 world.
Rahman and his collegues suggest that the term will be of great assistance to foresnic psychiatrists:
“Although forensic psychiatrists may not always agree on a particular individual's motives, this concept may help to sharpen their differential diagnosis in challenging cases such as Mr. Breivik's. Forensic psychiatrists should be aware of the powerful and destructive forces that extreme overvalued beliefs can unleash in any culture, subculture, political affiliation, or religion. They also should be aware of the differences in interpreting the diagnostic significance of such beliefs.”
A new edition of the Journal of Medicine and Philosophy explores a number of important debates about brain death.
The articles in the edition are the product of a Symposium on the Definition of Death held at The Catholic University of America in June 2014. That Symposium brought together scholars from a variety of disciplines— law, medicine, biology, philosophy, and theology—who all share a commitment to the dead-donor rule and to a biological definition of death, but who have differing opinions regarding the validity of neurological criteria for human death.
Significant figures in Catholic bioethics in the North America – including Maureen Condic, Melissa Moschella, Patrick Lee and E. Christian Brugger – offer their views on what sort of conditions signal the death of a patient.
Pace Condic and Moschella, Patrick Lee suggests brain death does not necessarily involve the end of autonomous organismal integration, but rather the end of any radical capacity for sentient activity:
“even if some brain-dead bodies are organisms, or complex entities of some sort, they are not human organisms: They lack the radical capacity for conscious sentience—a prerequisite for rationality in a human being—and so are not rational animals”.
Christian Brugger argues for a cautionary approach to the dead-donor rule, and is critical of the standard “brain-as-regulator-of-holistic-integration” rationale for the neurological definition of death.
The edition also includes a summary statement, signed by almost all the participants, outlining the broad points of agreement between interlocutors at the conference.
Legalisation of physician-assisted suicide in four American states left out one thing: a name for what happens. The laws in Oregon, Washington, Vermont and California specify only that what happens is not suicide. An English name for this phenomenon was a topic raised at the 2016 Conference World Federation of Right-to-Die Societies in Amsterdam earlier this month.
Members of the Alt-Suicide group, an American-based internet forum which includes some of the leading names in “choosing an early exit at the end of life”, considered 31 words and phrases in 2014. These included Cathartic Death, Deliberate Life Completion, Exiting, Rational Life Termination, Non Adscititious [sic] Death, Consensual Murder, and Rational and Loving Suicide. “Dying with Dignity” was the favourite in a small survey.
The analysis he presented at the conference is interesting. The movement needs, he contends, “a more positive, single word that is not burdened with negative connotation”. The members agreed that the word “suicide” should be taboo. The word should be short, so that it is easy to tweet. The task is, he says, to “Replace an undesirable single word with a desirable single word.” Simmons concludes with a suggested slogan: “Our motto is: ‘Dignicide. You Decide.’”
No conclusion was reached about what word to use.