GESTIÓN EN SALUD PÚBLICA: BioEdge: He did it: uproar over Chinese gene-edited babies

domingo, 2 de diciembre de 2018

BioEdge: He did it: uproar over Chinese gene-edited babies

BioEdge: He did it: uproar over Chinese gene-edited babies

Bioedge

He did it: uproar over Chinese gene-edited babies

by Michael Cook | 1 Dec 2018 |

He Jiankui

A Chinese scientist has faced widespread condemnation for editing the genome of two babies at his lab in the Southern University of Science and Technology in Shenzhen, together with an American colleague.

The researcher, He Jiankui, outlined his work at the Second International Summit on Human Genome Editing in Hong Kong. His experiments have not been peer reviewed or published so it is impossible for other scientists to verify his claims. In a Q&A session, He came under heavy fire from other scientists.

The summit’s closing message declared that “the procedure was irresponsible and failed to conform with international norms.”

The ostensible purpose of the experiment was to give "lifetime protection" against HIV, the virus that causes AIDS. Using the powerful gene-editing technology CRISPR, Dr He modified the DNA of embryos belonging to eight couples. All the fathers had HIV; none of the mothers did. Five of the embryos were implanted but only one woman gave birth -- to twin girls.

If what Dr He says is true – and it’s a big if -- this is a milestone in genetic technology. For the first time a scientist has created designer babies. His purpose was not to prevent the children from having a disease by editing a gene, but to improve their genetic profile by modifying it. In this case, he disabled a gene called CCR5 that creates a doorway for the HIV virus to enter a cell and cause AIDS.

Around the world scientists were furious. He's university declared that it had known nothing about his work and described it as a "serious violation of academic ethics and standards". “China has banned reproductive use of gene editing in human embryos,” said a government minister. “The experiment has violated laws and regulations in China.” Embarrassing the Chinese government is not a career-boosting idea, especially if you are a Chinese citizen. He might be punished severely.

He’s American colleague, Michael Deem, a bioengineering professor, is being investigated by Rice University.

An Australian researcher, Greg Neely, summed up the reaction of scientists: “Before we start editing human embryos to try and control disease, we first need to better understand the safety issues involved, and importantly we need to identify the most appropriate disease to target, in this case prophylactic editing to control future HIV infection was not justified. In the end the motivation here seems to be one of personal glory for the scientists involved, and there may be a horrific cost to pay for this hubris."

Even “progressive” bioethicists slammed He’s leap into the future. Julian Savulescu, an Oxford professor who supports genome modification, cried that it was “monstrous”. “This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit,” he wrote. “It contravenes decades on ethical consensus and guidelines on the protection of human participants in research. In many other places in the world, this would be illegal and punishable by imprisonment.” Gene editing was worth considering in cases where it was life-saving, he declared. But He’s experiment was “life-risking”.

Is this tsunami of indignation sincere? After all, the summit endorsed a statement which both condemned He and declared that “germline genome editing could become acceptable in the future”. In other words, most of the angry scientists have no ethical qualms about germline engineering in principle – only in practice. As a journalist for MIT’s Technology review, Antonio Regalado, tweeted, “The babies are a ‘misstep’. That's it. Not the last step."

He had not played the game by the rules. His experiment had not been passed by an institutional review board; it was announced in the media before it appeared in a scientific journal; and the ensuing scandal put a cloud over similar research.

In fact, modifying the human genome is already happening legally in the United Kingdom, where Parliament approved three-parent babies not long ago.

As Dr David King, of the British lobby group Human Genetics Alert, commented: "Although some scientists have condemned He Jiankui's criminal eugenic experiments, the truth is that they have themselves provided cover for him. Although there is no medical need whatever for genetic engineering of human beings, scientists' organisations always oppose a global ban.”

Only a few months ago the Nuffield Council on Bioethics, an influential British think tank, cautiously endorsed human genome editing. As long as it was safe and regulated, “the potential use of heritable genome editing interventions to influence the characteristics of future generations could be ethically acceptable in some circumstances.”

However, Dr He insists that he has acted ethically. In the YouTube video produced by his laboratory, he explains why.

If you take the trouble to listen, you might even agree with him. All of the reasons sound very familiar -- they are boilerplate from the IVF industry.

Family is society’s bedrock. Our children are the centre of family life. If we can protect a little girl or boy from certain diseases, if we can help more loving couples start families, gene surgery is a wholesome development for medicine.

Sunday, December 2, 2018

Many scientists were aghast this week when a Chinese expert in CRISPR, He Jiankui, announced the birth of gene-edited twins – probably the world’s first “designer babies”.

Dr He is being described as a “rogue scientist” who ignored the rules. But that is the way that whole field of reproductive technology has advanced. Bob Edwards, who won the Nobel Prize in Medicine for developing IVF, never sought ethics approvals or worried about the safety of the children.

In fact, he was an unashamed eugenicist. As Edwards said in 1999: “Soon it will be a sin for parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.” Edwards did not even seem to worry about the higher rate of birth defects among IVF children. They were just collateral damage of the “clinical imperative”.

Yet now Bob Edwards is regarded as a hero -- because his risky experiment worked.

I think that it is a bit unfair to label Dr He as a rogue. In fact, his robe-tearing, scandalised colleagues agree that editing the human genome is ethical. They are just worried that he did not tick all the boxes and do all the paperwork. This is very bad public relations for them and for the Chinese government.

In fact, given the deteriorating place of human rights in China at the moment, He Jiankui will be lucky to escape a long prison term -- or even execution – to regild the government’s tarnished image as a watchdog of uber-ethical science.