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|This week in BioEdge|
Gene-editing with CRISPR has in the headline in the past month and touted as a way of eliminating genetic diseases. But the cruder and cheaper technique of preimplantation genetic diagnosis does the same. And it is exploding in China. According to a feature in Nature, fertility doctors there “have been pursuing a more aggressive, comprehensive and systematic path towards its use there than anywhere else”.
The government’s current five-year plan for economic development has made reproductive medicine, including PGD, a priority. In 2004, only four clinics in the whole country were licensed to perform PGD; now there are 40.
Why the skyrocketing demand? With the recent relaxation of China’s one-child policy, many couples now want a second child. Since the mother may be older, she may need IVF to conceive. But there will be a higher risk of birth defects, so the embryos need to be screened to eliminate these.
The clinics are only allowed to screen for serious diseases. They are not permitted to do sex selection or to select physical traits, such as height and IQ. Some couples ask if the clinics can screen out embryos which carry a gene, common in China, which makes people unable to process alcohol. They want their child to be able to drink at China’s long, liquid business lunches. The official answer, however, is No.
According to Nature’s correspondent, David Cyranoski, there is very little ethical opposition to PGD in China:
“In the West, PGD still raises fears about the creation of an elite genetic class, and critics talk of a slippery slope towards eugenics, a word that elicits thoughts of Nazi Germany and racial cleansing. In China, however, PGD lacks such baggage. The Chinese word for eugenics, yousheng, is used explicitly as a positive in almost all conversations about PGD. Yousheng is about giving birth to children of better quality. Not smoking during pregnancy is also part of yousheng.”
But, compared to the West, PGD is regarded as a health issue, not an ethical one. “There are ethical problems, but if you bring an end to the disease, I think it’s good for society,” says Qiao Jie, a fertility doctor who is president of Peking University Third Hospital in Beijing.
This week’s headlines were filled with news from Charlottesville, Virginia, after a white supremacist drove his car into a crowd of people opposing a march of supremacists and noe-Nazis, killing one woman and injuring many others. Which leads one to ask: how white are American white supremacists?
For most of them, the most convincing way to prove their “whiteness” is DNA tests from companies like 23andMe.com and Ancestry.com. To their consternation, the results are often not what they expected. White supremacist Craig Cobb was outed on daytime TV in 2013 as “86 percent European, and … 14 percent Sub-Saharan African.”
What’s interesting is how the white supremacists respond to these disconcerting test results. Aaron Panofsky and Joan Donovan, sociologists at UCLA, studied online discussions of genetic ancestry test results on the white nationalist website Stormfront. They found that the participants used fairly sophisticated reasoning to challenge the results and regain their “whiteness”.
Cobb, for instance, denounced his test as “statistical noise” and described it as a Jewish conspiracy to spread “junk science” whose “intent is to defame, confuse and deracinate young whites on a mass level—especially males”. Using a test from another company he was able to claim that he was European, apart from a “3% Iberian thing.”
Panofsky and Donovan conclude that genetics cannot refute racist views. Even though mankind probably came from Africa and even though the notion of “racial purity” is absurd, racists can manipulate and interpret data for their own purposes. They conclude:
clear communication, simple forms of education, and collective denunciations of scientific misuses, scientists’ preferred forms of anti-racist action, are insufficient for the task. Challenging racists’ public understanding of science is not simply a matter of more education or nuance, but may require scientists to rethink their research paradigms and reflexively interrogate their own knowledge production.
Policy analysts are deeply concerned about the worsening opioid crisis in the US, and some are proposing radical measures to fight it.
A recently released study in the American Journal of Respiratory and Critical Care Medicine paints a grim picture of overdose and dependency among opioid users. Researchers from Beth Israel Deaconess Medical Centre in Boston and the University of Chicago report that opioid-related overdose deaths in the US have doubled since 2000 -- a result of addiction to both prescription painkillers like oxycodone and illegal drugs like heroin. Alongside this worsening trend, opioid overdose admissions requiring treatment in hospital intensive care units (ICUs) surged 34 % from 2009 to 2015, the study found. During this same period, the death rate for these ICU patients climbed from 7.3 % to 9.8 %. Drug overdoses are currently the number one killer of Americans under the age of 50.
“When we think of overdoses, we need not to just think about whether people died or survived, but also about the tremendous personal and societal costs” Dr Jennifer Stevens of Harvard Medical School, a lead author of the study, told Reuters.
Some specialists suggest that greater access to traditional opioid substitutes would lead to positive change. “People who use injection drugs should obtain naloxone, the overdose reversal drug, and use drugs with partners who can help them,” says Brendan Saloner, a researcher at the Johns Hopkins Bloomberg School of Public Health in Baltimore. “There is unfortunately a lot of stigma about medication treatments, but they are safe and work,” Saloner added. “Long-term change is possible and recovery is a realistic goal, but it requires time and patience.”
Yet some suggest that standard treatments are failing to address the problem. Instead of providing methadone and naloxone substitutes, Chelsea Cox, a candidate for a JD and a Master of Health Administration at Dalhousie University, argues that we should de-stigmatise marijuana and make the drug more readily available:
“Patients want access [to medicinal marijuana] … A team from University of California, Berkeley reported that 93% of patients said that they decreased their use of opioids when they also used medical marijuana. These numbers show the need for governments to get on the same page as patients – especially with 142 Americans dying from drug overdoses each day.”
The latest husband-and-wife euthanasia in the Netherlands took place on July 4. Nic and Trees Elderhorst, both 91, died in their home town of Didam, surrounded by family members. Neither was terminally ill, but both were in failing health. Nic, the husband, had a stroke five years ago, and Trees, the wife, was declining into dementia.
The couple had made advance directives in 2012 but they needed the euthanasia before Trees became unable to give her informed consent.
The couple applied to the Levenseindekliniek, a clinic which handles euthanasia requests when other doctors refuse. “They gave each other a big kiss and passed away confidently holding hands,” one of their daughters told a local newspaper, the Gelderlander.
Couple euthanasia is relatively common in the Netherlands, although some requests are refused because one of the partners does not fulfil the criteria. According to the Gelderlander, there are “a few cases a year” – statistically negligible, but socially significant and no longer surprising.
As euthanasia rates increase in the Canadian province of Ontario, pressure is mounting on Catholic Healthcare providers to abandon their blanket opposition to Medical Assistance in Dying (MAiD).
Over 630 Ontarians have received MAiD since the procedure was legalised in Canada in 2015, according to data from the provincial coroner, yet none of these cases has taken place in a Catholic healthcare facility.
Lobby groups are now calling for sanctions on Catholic healthcare providers, particularly in light of the public funding these providers receive.
Dying With Dignity Canada CEO Shanaaz Gokool told CBA News that her organisation is considering a legal challenge of Catholic hospitals’ right to conscientiously object to participation in euthanasia.
Gokool says that the Catholic healthcare policy of transferring MAiD patients to secular facilities places an undue burden on patients. "It really depends on how precarious their physical medical condition is," she said. "And if they are in a precarious state physically, then that can cause them more trauma."
Ontario health minister Eric Hoskins said that access to MAiD was not currently a problem. "We're obviously monitoring it very, very closely and currently don't have those concerns in terms of access," he told CBA News. "And about half of medical assistance in dying happens at home”.
Earlier this year a group of Catholic hospitals and clinics for the mentally ill in Belgium announced that it would allow doctors to perform euthanasia on its premises. The group is linked to a religious order, the Brothers of Charity.
Earlier this month Pope Francis issued an ultimatum: this must stop by the end of August. He also ordered the three Brothers who serve on the 15-member board to sign a letter stating that they “fully support the vision of the magisterium of the Catholic Church, which has always confirmed that human life must be respected and protected in absolute terms, from the moment of conception till its natural end.”
If the board refuses, the hospitals could lose their affiliation with the Catholic Church.
One of the board members is Herman Van Rompuy, a former President of the European Council and Belgian Prime Minister. He tweeted that “The time of ‘Roma locuta causa finita’ is long past.”
Brother René Stockman, the head of the Brothers of Charity, is a Belgian but opposes the stand taken by the local members of his own order. He commented: “The central point and the foundation within Christian ethics is that life is absolute, which cannot be touched. Life is a gift from God and entails an assignment. And because life is absolute, it is a state worthy of protection.”
A spokesman for the Belgian group acknowledged that it had received a letter from the Vatican but said that it had not yet responded.
There is significant debate about the link between religion and psychological well-being.
University of California Irvine psychiatrist Aaron Kheriaty recently weighed into the discussion, arguing that higher rates of suicide in the US are linked to declining religious participation and a sense of fractured identity among younger Americans. In an opinion editorial published this month’s edition of the Catholic intellectual journal First Things, Kheriaty warns of a “rising plague of melancholy”:
“In recent times, America has experienced both a weakening of social connections and rapid forms of cultural change...Too many people today have lost these moorings. Social bonds are weakening, and the social fabric is fraying. We are at risk of losing a solid identity, a clear orientation, and the coherent narratives that give meaning to our individual and shared lives. In a world stripped of universally binding truths, the sense that we are losing solid foundations leads to free-floating angst.”
Several recent studies on religion and depression provide support for Kheriaty’s thesis. A 2016 study by influential Harvard psychiatrist Tyler VanderWeele, for example, revealed that religious participation among American women was closely linked to lower rates of suicide. Between 1996 and 2010, those who attended any religious service once a week were more were five times less likely to commit suicide. Of the 6,999 Catholic women in the study who said they attended Mass more than once a week, none committed suicide.
Some studies suggest that the relationship between religious participation and suicide differs between cultures and regions. A recent study published by University of Michigan sociologist Ning Hsieh, for example, claims that in some regions of the world religious participation is correlated with higher rates of suicide. Other recent studies, however, dispute this conclusion. A 2017 study published by researchers from Columbia University Medical Center states that “religious service attendance is not especially protective against suicidal ideation, but does protect against suicide attempts, and possibly protects against suicide”.
Congressional Democrats have approached outspoken Yale University psychiatrist Dr Bandy Lee about forming an expert panel to offer advice on President Donald Trump’s mental health.
Dr. Lee – who told the media earlier this year that psychiatrists have “an obligation to speak about Donald Trump’s mental health issues” – says she has talked with several members of congress or their staff about convening psychiatrists, psychologists, and other mental health professionals to review the president’s health.
Lee told a STAT reporter that she would meet Democratic representatives in September to discuss the proposal. Democratic senators have already tabled a bill in Congress that invokes the 25th Amendment and seeks to establish “a commission on presidential capacity”.
In October Lee will release a book entitled The Dangerous Case of Donald Trump that summarises the views of 27 psychiatrists on Trump’s worrisome psychological state.
Recently BioEdge reported on an influential psychiatric association’s decision to abandon the decades old Goldwater Rule – a professional maxim that psychiatrists should refrain from offering their expert opinion on public figures whom they have never seen as patients.
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."
He went on to say, "I don't think there's anything wrong with aspiring to have healthy children, but how far we should go in seeking those goals is a fairly complicated decision."