Distress felt by parents of a dying newborn can justify the child’s euthanasia, says Royal Dutch Medical Association (KNMG), which represents doctors in the Netherlands.

In a new policy document, “Medical decisions about the lives of newborns with severe abnormalities” (in Dutch only) the KNMG explains why it is acceptable, and perhaps even necessary, to euthanase children. This is no longer headline news in the Netherlands, as newborn euthanasia is allowed under the so-called Groningen Protocol, drafted by Dr Eduard Verhagen in 2004.  

The stunning novelty of this statement is that it says that the parents’ suffering may be a reason to kill the newborn. Amongst other conditions, the policy states that a lethal injection of muscle relaxant is ethically possible when “The period of gasping and dying persists and the inevitable death is prolonged, in spite of good preparation, and it causes severe suffering for the parents.”

Dr Verhagen, one of the authors of the KNMG report, explained to Volkskrant, a leading Dutch newspaper, why parental anguish is relevant. "These children are gray and cold, they get blue lips and suddenly every few minutes they take extremely deep breaths. That's very nasty to see, and it can go on for hours and sometimes days."

The experience is extremely stressful for parents. The sight of a child shuddering in its last moments could scar them for ever. However, even Dr Verhagen admits that the child may not actually be suffering. It may feel pain and discomfort, but suffering is complex social and psychological phenomenon without scientifically validated criteria.

What is more objective is the suffering of the parents who witness the child’s distress. Doctors should spare parents the “abomination” of seeing their child die in distress, argues Dr Verhagen. It is part of good palliative care.

The criteria for euthanasing newborns are as follows (from page 54 of the report): if the child is suffering, if it cannot express its own wishes, if death is inevitable and if the dying process is prolonged, then the child may be euthanased and spare the parents further severe suffering.

Of the 175,000 babies born every year in The Netherlands, the KNMG suggests that about 650 might be cases which would be worthy of euthanasia.

“These babies, despite very intensive treatment, will certainly die in the short term. They have a poor prognosis and a very bleak life perspective. They may not be dependent on intensive care but they face a life of serious and hopeless suffering. Doctors and parents face the exceedingly profound question of whether to start or continue treatment or even whether a good action may actually be a harm, in view of the suffering and disability that may result from the poor health of the child.” 

In a unanimous 9-0 decision, the US Supreme Court has ruled that human genes cannot be patented. The implication of this important case, Association for Molecular Pathology v. Myriad Genetics, is that genetic tests may become much cheaper. Myriad held patents on the BRCA1 and BRCA2 genes, which are associated with breast and ovarian cancer. Its tests, which cost about US$3,000, were far too expensive for many women. Some observers have optimistically declared that the price could sink to $100.

Thousands of genes have been patented over the past 30 years, so the decision could open up new avenues for tests, medicine and genetic research.

“Myriad did not create anything,” Justice Clarence Thomas wrote in the decision. “To be sure, it found an important and useful gene, but separating that gene from its surrounding genetic material is not an act of invention.”

The court’s decision did not come as a surprise and Myriad’s share price actually rose briefly, before falling by about 5%. The court upheld its claims on complementary DNA. 

Earlier this month the US Supreme Court ruled in a 5-4 decision that DNA swabbing of people who have been arrested is constitutional. In Maryland v. King the court supported Maryland police, arguing that forced DNA swabbing was similar to procedures like fingerprinting and photographing, both of which are permissible under the Fourth Amendment. The respondent, Alonzo King, claimed that swabbing was prohibited by the the Fourth Amendment, which states that 'unreasonable searches and seizures' of unconvicted individuals are illegal.

In 2009 Alonzo King was arrested in Wicomico Country, Maryland, on assault charges. Police forcibly obtained a DNA swab, suspecting that he had previously offended, and discovered that his DNA matched evidence from an unsolved 2003 rape case. He was subsequently convicted of that crime.

In all US jurisdictions authorities are allowed to take swabs of someone convicted of a serious crime. While 29 states, including Illinois, and the federal government go further and take DNA samples from at least some people put under arrest, the constitutionality of testing arrestees had remained in doubt.

Civil liberties advocates believe that the government will have unjustifiable access to personal information. In the words of dissenting Judge Antonin Scalia: "Make no mistake about it: Because of today's decision, your DNA can be taken and entered into a national database if you are ever arrested, rightly or wrongly, for whatever reason…

“Perhaps the construction of such a genetic panopticon is wise. But I doubt that the proud men who wrote the charter of our liberties would have been so eager to open their mouths for royal inspection.”

A controversial drug test on non-consenting patients has been proposed by doctors in Massachusetts. The trial, which will test the effectiveness of the drug progesterone, would involve patients who have sustained a brain injury a few hours before treatment. Many patients arrive at hospital unconscious and doctors argue that they need to perform the test without their consent. 

The study, recently submitted to the Food and Drug Administration for approval, will examine the efficacy of the drug in preventing a “secondary cascade” of brain injury resulting from swelling, fluid build-up and metabolic changes.

“We have a devastating disease that causes tremendous lifelong disability for people around the country and around the world, with no proven treatment,” said Dr Joshua Goldstein, an investigator and director of the Center for Neurologic Emergencies at Massachusetts General. “We’re hoping that the time has come to find a treatment.”

But some bioethicists believe that informed consent is almost always more important than research. George Annas, a Boston University bioethicist who is not involved in the brain trauma proposal, argued that "you need something that's as powerful as consent". “People don’t expect to be researched on when they go to an emergency department, and they don’t consent to research just by being in an accident", he said.

In lieu of individual consent, researchers are trying to foster community support for the study. The Boston researchers have issued surveys, hosted a table at Boston University’s wellness fair, convened focus groups, and made presentations to various community groups. Other study trial sites have tried billboards.

Federal law and the generally accepted ethics of medical research require that patients or their surrogates be told about any risks of participating in a study and have the chance to refuse enrolment. But in 1996 the FDA created rules allowing exemption in some cases involving emergency care. With 40 hospitals already participating, the trial has enrolled more than 760 people. 

Edmund Pellegrino, a “conservative” bioethicist who won the respect of colleagues of all persuasions, died this week at the age of 92. To the public he was probably best known as the second chairman of the President’s Council for Bioethics under George W. Bush. Under his predecessor, Leon Kass, the Council produced some memorable work, but was savagely (and unjustly) criticised for being Bush’s lapdog. In Bush’s second term Pellegrino managed to soothe ruffled feathers without compromising his own principles and the controversies died down. 

He was the founding editor of the Journal of Medicine and Philosophy, and the founding director of Georgetown University’s Center for Clinical Bioethics. He also served as President of The Catholic University of America from 1978 to 1982.

His research interests included the history and philosophy of medicine, professional ethics, and the physician-patient relationship. He published more than 600 articles and chapters and 23 books on medical science, philosophy, and ethics.

In an era of scientism, Pellegrino was a resolute humanist. Here are a few lines from an interview from 2010:

“What is it to be a human? Is there any distinction between humans and other species? What are those distinctions and how do they affect the ethical decisions that we must make? Are there some things which ought never to be done?... when you ask these questions, you are asking the kinds of questions that science alone cannot answer. Science can tell us how we work. Science can tell us what we can do to modify those workings. Science can explain the way things are related to each other. We can probe into how they have come about through the use of the experimental method. But, science cannot ever tell us what we ought to do, or what we should do.”

One of the rare issues on which President Obama has agreed with conservative critics is restricting the availability of emergency contraception to women 17 and older. "As the father of two daughters, I think it is important for us to make sure that we apply some common sense to various rules when it comes to over-the-counter medicine," he said in 2011 in the lead-up to the 2012 election.

Ever since, his Administration has tried to defend the ban in the courts. But in April US District Judge Edward Korman ruled that the drug should be readily available for all ages and described the US Food and Drug Administration’s stand as "arbitrary, capricious and unreasonable” and politically motivated.

This week the Administration abandoned the fight. The morning-after contraceptive pill will now be sold as freely as headache tablets. "This decision by the administration affirms what feminists have been fighting for all along – the morning-after pill should be available to females of all ages, on the shelf at any convenience store," said Annie Tummino, of the National Women's Liberation group.

The President’s erstwhile allies were disappointed. Americans United for Life President Charmaine Yoest told the Washington Post. “There are so many reasons to maintain some measure of control over the distribution of such a strong drug, particularly to young women. I see this as a really, really terrible development. . . . I just think it’s very troubling and sets a really bad standard.”

A convicted Israeli paedophile adopted a 4-year-old girl from a surrogate mother in India, the Jewish Chronicle has reported. Local authorities do not have the authority to remove the child from his care. The facts of the case are not altogether clear from media reports, but children’s rights advocates are alarmed.

"In the past six years, 200 children have come to Israel via foreign surrogacy," said NCC Executive Director Dr Yitzhak Kadman. "This case is a good wake-up call that there are changes that have to be made." Overseas surrogacies have risen steeply in recent years because of the difficulties in organising them in Israel, especially for homosexual couples.

A bill regulating surrogacy is stalled in India’s Parliament. In the meantime, there is no effective regulation, Rekha Agarwal, a Supreme Court lawyer dealing with adoption cases, told the Indian website DNA. 

Sterilization of poor Indian women is still a major tool used by state governments to slow population growth. India carries out 37% of the world’s female sterilizations – 4.6 million of them last year. There are financial incentives, but often mass sterilizations camps are coercive and dangerous, as an article from the Bloomberg news service shows. An Indian lobby group, the New Delhi-based Human Rights Law Network, has filed a lawsuit to stop them.

“India has the most coercive birth control methods in the world after China,”  Abhijit Das, director of the Center for Health and Social Justice in New Delhi, told Bloomberg. “Family planning has become a system of quotas and human beings are the targets.”

Here are a few paragraphs describing the appalling conditions under which the women are sterilized:

“At the clinic, held in mid-March in the town of Sonhoula, the 33 women who had registered for surgery lined up in the heat outside as guards carrying bamboo sticks watched over them. They were then led into a dimly lit room, with peeling paint on the walls and bare concrete floors, and placed on makeshift operating tables propped up with bricks.

“Dressed in jeans and flip-flops, A.K. Das, the surgeon at the clinic, moved from one operating table to the next as he made an incision below the navel in each woman, then cut and tied their fallopian tubes. The patients were laid shoulder-to-shoulder on the floor in a separate room to recuperate.

“Das, who spent three minutes on each operation, ran out of anesthetic with more than 10 patients to go, forcing him to use a weaker sedative. He said he’s paid an extra $2 per patient by the government for continuing to operate under these circumstances. In between each operation an assistant washed the scalpel in a tray filled with warm water.

“’The surgical equipment is meant to be brand new, but look at this,’ he said, pausing during an operation to hold up the rust-stained scalpel he was using. ‘This is dirty and that will significantly increase the chance of infection.’ …

“Flies swarmed through the windows of the Bihar clinic, landing on patients. Das, the surgeon, removed his surgical mask after several operations because of the heat. Health workers milled about without protective gloves, shoes or masks. When the electricity shut down, a generator was cranked up. Dogs walked down the corridors outside the recovery room.

“The women had cotton wool taped over their wounds. Nurses stepped around those lying on the floor, offering pain killers to the ones who groaned in agony.

“’The program should be voluntary, said Das, the surgeon, his face dripping with sweat as he ended his day. ‘There shouldn’t be any targets. This isn’t why we entered medicine. The entire system needs to be changed.’”

Stanford University has introduced an ambitious new genetics subject into its medical curriculum, in which students study their own genetic data. They extract their DNA for testing, and then analyse its implications.

The unit has proved popular. “Trying to use my own genetic information as a learning tool — that sounded like something I wanted,” said bioscience graduate student Thomas Roos, 28. He learned that he and his twin brother have slightly elevated risks of an Achilles tendon injury and dementia but a reduced risk of heart disease and arthritis.

One student discovered that he had a different father than he thought. The test revealed the student’s father was not the man married to his mother, but rather a doctor. “He was amazingly OK with this,” said Stuart Kim, the co-ordinator of the unit.

Studies have shown that very few physicians know how to use this data to help patients. The Stanford course is intended to address this. 

When it was proposed two years ago it sparked intense debate, leading to the creation of a 29-member task force — lawyers, physicians, ethicists, philosophers and other faculty members — to investigate the possibility that findings will trigger student stress.

The subject is an elective unit, and prospective students are required to attend several informed consent sessions. They also have access to special psychiatric care and genetic counselling. 

Governments should butt out of the patient-doctor relationship, says an exasperated peak body for American doctors. The American Congress of Obstetricians and Gynecologists (ACOG) has published a new policy statement objecting strongly to laws forcing healthcare workers to give or withhold specific information or that mandate specific treatments, tests, and procedures.

ACOG also objects to laws that interfere with the patient’s right to be counselled according to the best currently available evidence-based guidelines and a doctor’s professional judgment.

Specifically, ACOG complains about laws that prohibit physicians from speaking to their patients about firearms and gun safety; dictate a script about what must be communicated to women about breast density and cancer risk; and that require women to have unnecessary ultrasounds before an abortion.

“We are speaking out not just on behalf of ob-gyns, but for all physicians and patients,” says ACOG’s president, Jeanne A. Conry. “Many of these laws are dangerous to patients’ health and safety. As physicians, we are obligated to offer the best evidence-based care to our patients. Government should stay out of imposing its political agenda on medical practice.”

ACOG seems to have in mind regulations in states where the pro-life cause is popular. However, its argument could be a double-edged sword. Insistence on respect for a doctor’s professional judgement could also support conscientious objection to abortion, sterilization, contraception and so on by other doctors.