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What are the ethics of baby gene-editing?
By Paul RICARD
Paris (AFP) Dec 1, 2018

China AIDS group 'really regrets' role in gene-editing
Beijing (AFP) Nov 30, 2018 - The head of a Chinese AIDS support group expressed deep regret Friday for helping a scientist recruit participants for a controversial experiment claiming to have created the world's first genetically-edited babies.

The medical trial, which was led by Chinese scientist He Jiankui, purports to have successfully altered the DNA of twin girls, whose father is HIV-positive, to prevent them from contracting the virus.

The founder of the Baihualin (BHL) China League, who calls himself "Bai Hua", reportedly introduced 50 families to He's team for clinical trials.

The AIDS support group operates various online chat groups, including some dedicated to married couples affected by the disease -- the perfect source for He's experiment.

"I admit that I really regret this incident, and am also very worried about these families and their children," Bai wrote in statement on BHL's blog Friday.

"I really want to say that I was tricked, but I don't want to push away responsibility either," Bai added.

He's experiment has prompted widespread condemnation from the scientific community in China and abroad, as well as a harsh backlash from the Chinese government.

On Thursday, the Chinese ministry of science and technology stressed its opposition to the gene-editing baby experiment, and demanded a halt to the "scientific activities of relevant personnel".

The Chinese scientist's claims were "shocking and unacceptable" and breached "the bottom line of morality and ethics that the academic community adheres to", vice minister Xu Nanping told state broadcaster CCTV, warning that it may have broken the law.

China's National Health Commission has ordered an investigation into He's experiment.

- China's AIDS epidemic -

The public outcry over He's experiment has drawn attention to the growing HIV/AIDS epidemic in China, which has seen a drastic surge in new cases in recent years.

Last week, citing remarks at a national health commission conference, official news agency Xinhua reported that there were an estimated 1.25 million HIV-positive people in China.

According to statistics from UNAIDS, an international organisation dedicated to AIDS advocacy, a total of 36.9 million people around the world were living with HIV in 2017.

In the 1990s, rural parts of China -- particularly the central province of Henan -- endured the country's most debilitating AIDS epidemic.

It stemmed from a tainted government-backed blood donation programme and infected tens of thousands of people, including entire villages.

However, sexual transmission is now the primary way of contracting HIV in China, not blood transfusions. According to a Xinhua report in September, 93.1 percent of new reported cases in the second quarter were through sex.

The same report said the number of people with HIV/AIDS in China surged 14 percent year-on-year as of the end of June, or by about 100,000 people.

China also has a long history of ostracism of HIV/AIDS patients, which further complicates prevention efforts.

HIV-positive individuals have faced discrimination in the Chinese job market for years, and foreigners with the virus were banned from obtaining visas until 2010.

In December 2014, more than 200 people signed a petition to expel an HIV-positive eight-year-old boy from their village, prompting a national debate and highlighting the stigma involved.

"I hope that everyone can view the HIV/AIDS community in a correct way, and not discriminate against those with HIV/AIDS," emphasised Bai in his statement Friday.

A Chinese scientist's stunning claim he has pioneered the world's first genetically modified baby has suddenly made the eternal debate over ethics and emerging scientific capabilities pressing and real.

Should everything that becomes technically possible be carried out? For most ethicists the answer is no -- but the tricky part is whether it can be prevented.

"It's obvious that everything that is technically feasible is not ethically desirable," said Cynthia Fleury, a member of the French Ethics Committee.

"But to resist that, in a context of deregulated scientific competition, is structurally destined for failure."

It's a question as old as science: Are ethics condemned to constantly nip at the heels of advances that burst forth and take a head start?

Certainly the case in China has brought the debate to the fore.

That country's National Health Commission has ordered a probe into the baby gene-editing announced by scientist He Jiankui, in which he claimed to have tinkered with the DNA of twin girls born a few weeks ago to prevent them contracting HIV. China's government said it was opposed to the experiment, while the scientific world erupted in uproar.

The alleged breakthrough has not been verified. And, after a backlash, He said his trial has been suspended and he has disappeared from public view.

"Good science is not just about generating knowledge in a vacuum. Context and consequences are vitally important, and the consequences of this irresponsible action may be dire indeed," said Dr Sarah Chan, of the University of Edinburgh.

For all the condemnation, however, it is important to note that many objections were not over the principle of human genetic modification as such, but rather over the way the experiment was carried out.

For instance: it was conducted outside of typical institutional structures, by a lone scientist acting in a way seen by many as premature given the technology used.

He said he employed CRISPR, a technique which allows scientists to remove and replace a strand with pinpoint precision.

But the consequences of the technique are not yet fully known -- particularly whether genetic slicing and splicing like that carried over from one generation to the next, with unpredictable effects. The fear is that reckless application of CRISPR might create "monsters".

Another ethical violation raised is that the aim of He's experiment was to protect the babies against AIDS and not to try to cure them of a life-threatening disease.

- "Trying to rush the technology" -

The concern of the scientific community is that by stepping across established ethical red lines, ensuing public suspicion could crush a field of very promising research.

While CRISPR might spark unease of a future for humanity straight out of an Aldous Huxley novel, it also bears enormous hopes of being able to treat genetic infirmities.

"Trying to rush the technology forwards, skipping vital scientific and ethical steps, could end up setting us all back," warned Dr Kathy Niakan, a biologist at the Francis Crick Institute in London.

Yet that view in itself shows just how far ethics have evolved to the pace of scientific change.

For many decades, the idea of modifying human genomes was simply unthinkable. Now, several international scientific organisations conceive of it being possible, within a rigorous framework.

"You can't just say that something is taboo and that's that, you can't ever think about it again," Anne Cambon-Thomsen, a specialist in immunogenetics and health ethics, and emeritus head of research at France's CNRS national scientific research centre, told AFP.

"An essential point of our humanity is to be able to react by thinking about what is made possible by our technical abilities," said Cambon-Thomsen, who is part of a European Group on Ethics in Science and New Technologies that advises the EU.

Such a shift in acceptance has already been seen, for example, in the field of organ transplants.

Yet human cloning, at present, still remains an intolerable premise. According to Cambon-Thomsen, that's because "we have difficulty in showing some sort of (medical) advantage in cloning".

Following the storm sparked by He Jiankui's announcement, scientists are calling for an international treaty on gene-editing.

But agreeing global regulation "isn't easy because cultures are different -- we don't think of human beings in the same way in China as in the West," observed Thierry Magnin, rector at the Catholic University of Lyon.

Magnin, a theologist and physicist, said: "Ethics must be integrated right from the start when technologies are developed, and not come in the end."


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SPACE MEDICINE
Gene-edited babies and cloned monkeys: China tests bioethics
Hong Kong (AFP) Nov 27, 2018
A Chinese scientist's claim that he created the world's first genetically-edited babies has shone a spotlight on what critics say are lax regulatory controls and ethical standards behind a series of headline-grabbing biomedical breakthroughs in China. University professor He Jiankui on Sunday said the DNA of twin girls had been altered to prevent them from contracting HIV, but his claims prompted a fierce backlash from the scientific community who not only cast doubt over the breakthrough, but also ... read more

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