Nearly 100% of Down syndrome babies are aborted in Iceland, according to a CBS News special report – probably the highest in the world. The rate in the US is 67 percent (1995-2011); in France 77% (2015); and in Denmark 98% (2015).
Some women who have refused to have prenatal screening and others whose screening test returned a false negative continue to give birth to Down syndrome children, but this sum up only to 1 or 2 a year. The others are all aborted.
This is happening, as CBSN observes, even though “Many people born with Down syndrome can live full, healthy lives, with an average lifespan of around 60 years.”
"It reflects a relatively heavy-handed genetic counseling," says Kari Stefansson, the founder of deCODE Genetics, a world-renowned genetics database. "And I don't think that heavy-handed genetic counseling is desirable. … You're having impact on decisions that are not medical, in a way."
The 1979 Belmont Report by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research laid the foundations for bioethics standards in the United States and around the world. It identified three core principles: respect for persons, beneficence, and justice and three areas where ethical analysis was particularly needed: informed consent, assessment of risks and benefits, and selection of subjects.
But this was nearly 40 years ago. Is it time for an overhaul?
Yes, according to a leading American bioethicist, Art Caplan and three colleagues writing in the American Journal of Bioethics:
Since its release, the field of research involving human subjects has developed in complex and unexpected ways, challenging the report's ethical framework to respond not only to the fears related to research abuses that it stemmed from, but also to the increasing commodification of biomedicine, the exclusion of many groups from research, the globalization of research, the desires of many to…
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Michel Cadotte, his sister and his sister-in-law entering court
The ink was hardly dry on Canada’s right-to-die legislation before lawsuits began to expand eligibility for euthanasia to those who are not terminally ill. And now a high-profile case in Quebec could lead to euthanising patients with dementia.
On February 20 Michel Cadotte was arrested by Montreal police after a post appeared on his Facebook page: “I’ve cracked, nobody asked how I’m doing, but now you know, I’ve consented to her request of assistance in dying, I’m waiting for the police.”
Cadotte, 56, was paying a visit to his wife, Jocelyne Lizotte, 60, who had Alzheimer’s disease and was living in a nursing home. He took a pillow and smothered her to death. He had been caring for her since 2006 and was exhausted.
She had reportedly wanted to be euthanised. However, even though Canada allows euthanasia (and Quebec also has its own law), a patient has to be legally…
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Although the interest of some German scientists in now-discredited racial theories is best known as a World War II phenomenon, archivists have discovered that at least one POW camp in World War I was also a centre for racial research. According to a feature on Australia’s ABC, an Aboriginal soldier, Douglas Grant, was captured at Battle of Bullecourt in April 1917. Eventually he ended up at Wünsdorf, a POW camp south of Berlin.
The POWs of Wünsdorf were an extraordinary bunch, for they were mostly Muslims. One of the more bizarre schemes of their German captors was to whip up fervour for jihad among Muslim POWs and send them back to India and the Middle East to stir up trouble for the Allies. The 5000 POWs were given luxurious treatment and an elaborate mosque was built in the camp. It was Germany’s first.
“To die in order to live” is one of the commonplaces of Christian piety. So it was a bit jarring to stumble across a similar sentiment in an article in the journal Bioethics by utilitarian bioethicists. In discussing the ethics of cryopreservation, Francesca Minerva, of the University of Ghent, and Anders Sandberg, of the University of Oxford, recall that two cryopreserved people “wanted to die in order to live”.
It is in this spirit that they defend the possibility of euthanasia followed by cryopreservation, a procedure they call “cryothanasia”:
It achieves the positive goal of euthanasia (ending suffering) without its negative instrumental side-effect (permanent cessation of life). Even if it turns out to cause information-theoretic death, the intention is clearly to extend life.
They argue that objections to euthanasia should not apply to cryothanasia. The first objection is the “weirdness argument”. Weird it is, they admit, but we already allow weird practices like circumcision or refusing…
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A landmark study has reopened the door for xenotransplantation research (research into interspecies transplants).
A team of Chinese and US scientists have created gene-edited piglets that are free of harmful viruses that cause disease in humans. Scientists now believe that pig organs can be edited to prevent rejection when transplanted into the human body.
In a paper published in the journal Science on Thursday, researchers reported that they had successfully used CRISPR technology to “splice out” 25 porcine endogenous retroviruses (PERVs) from the genetic code of 37 piglets. The viruses are scattered throughout the pig genome and have the potential to cause bizarre and harmful retroviral infections in humans.
While safe and effective pig-to-human organ transplants are a long way off, the researchers are optimistic.
The bill, which expands on compassionate-use legislation passed in states across the country, will give patients the right to request trial drugs directly from pharmaceutical companies. Currently patients must submit an application to the FDA before approaching manufacturers.
The bill also ensures that patients are charged no more than the production cost for the drug, while providing pharmaceutical companies with a degree of legal protection if the patient experiences harm from the treatment. Safety issues that occur in compassionate-use cases must be reported to the FDA, the proposed legislation states.
“Patients with terminal diseases ought to have a right to access treatments that have demonstrated a level of safety and could potentially save their lives,” Senator Ron Johnson of Wisconsin, the author of the bill, said in a statement after the unanimous Senate vote.
Researchers have successfully used an artificial womb to incubate premature lambs, with experts saying the technology may one day be used for extremely premature babies.
In a paper published this week in the American Journal of Obstetrics and Gynecology, researchers affiliated with the University of Western Australia (UWA) report that they have incubated premature baby lambs in a uterus-like environment for seven days, allowing the lambs to grow without the adverse effects of a preterm birth.
The researchers call their technique ex-vivo uterine environment (EVE) therapy, and it involves placing the infant specimen in a high-tech amniotic fluid bath with an artificial placenta that allows for gas exchange and nutrient delivery.
“By providing an alternative means of gas exchange for the fetus, we hoped to spare the extremely preterm cardiopulmonary system from ventilation-derived injury, and save the lives of those babies whose lungs are too immature to breathe properly”, UWA Associate Professor Matt Kemp said. “...Although significant development…
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A New York IVF clinic has been told by the US Food and Drug Administration to stop marketing Mitochondrial Replacement Therapy (MRT) – an experimental procedure that aims to prevent defective mitochondrial-DNA from being passed on to children.
New Hope Fertility Clinic – a business of Dr John Zhang, an American clinician who last year delivered the first “three parent baby” – has been advertising the procedures on its website for months. It is described MRT as a "revolutionary technology designed to reverse the effects of age on human oocytes and repair certain cellular defects”, and “the first proven treatment for certain genetic disorders”.
While MRT is prohibited in the US, Dr. Zhang and colleagues have set up a clinic in Guadalajara, Mexico. For roughly US$80,000, New Hope was offering to take women to the Mexican clinic to receive the procedure.
American and Korean scientists have published in Nature the details of how they successfully edited a single gene in human embryos. A team of American, Chinese and Korean scientists led by Shoukhrat Mitalipov of Oregon Health and Science University used gene-editing CRISPR/Cas9 technology to eliminate a gene, MYBPC3, linked to a heart disorder.
Stem cell scientist Paul Knoepfler said that the highly-anticipated paper was technically strong, innovative and rigorous – which suggests that other scientists will soon be building on Mitalipov’s achievements. Perhaps one of the most significant of these was its safety. The paper claims that there were no off-target mutations and no mosaic embryos.
The potential for the technique is immense. The article focuses on curing diseases. About 10,000 harmful single-gene mutations have been identified from breast cancer to Tay-Sachs. Interest in eliminating these will be intense.
However, when other less competent, less experienced and less ethical scientists scale up the number of embryos, safety could obviously suffer.
