Hong Kong – A Chinese scientist claims to have helped create the first genetically modified babies in the world: two twins whose DNA has been modified to try to help them resist a possible future infection with the human immunodeficiency virus (HIV) ).
If true, it would be a deep leap in science and ethics.
A scientist from the United States said he was involved in work in China but this type of genes is forbidden in the country because DNA changes can be passed on to future generations and risk damaging other genes.
Many conventional scientists believe it is too dangerous to try, so some have condemned that the Chinese report is human experimentation.
Researcher He Jiankui of Shenzhen said he had changed the embryos to seven couples during the treatment of fertility, and so far there has been one pregnancy. He said his goal was not to cure or prevent hereditary illness but to try to give a trait that few people have naturally: the ability to confront a possible future infection with HIV, the virus that causes the acquired immune deficiency syndrome AIDS).
He added that participating parents refused to be identified or interviewed, and did not say where they lived or where the job was done.
There is no independent confirmation of His claim and has not been published in a journal where other experts could consider it. The announcement was revealed on Monday in Hong Kong, one of the organizers of an international Genetic Editorial Conference, which will begin on Tuesday, and previously in an exclusive interview with The Associated Press.
"I feel a great deal of responsibility, not just to do it first, but to be an example," he told AP. "Society will decide what to do next" in terms of resolving or banning such sciences.
Some scientists were surprised to hear the allegation and strongly condemned it.
This is an "unthinkable … experiment with people who are not morally or ethically protected," said Dr. Kiran Mussundu, Genetic Editor at the University of Pennsylvania and editor of the Genetics Magazine.
"It's too early," says Dr. Eric Topol, who runs the Scripps Translation Research Institute in California. "We are dealing with the operational instructions of the human being, this is a big problem."
A well-known geneticist, George Church at Harvard University, however, protects the genetic editing experience of HIV, which he called a "bigger and rising threat to public health."
"I think this is justified," the Church said for this purpose.
In recent years, scientists have found a relatively easy way to edit genes, the DNA strands that drive the body. The tool, called CRISPR-cas9, allows you to work with DNA to deliver the necessary gene or to ban the one that causes the problem.
Only recently has adults been tried to treat lethal diseases, and the changes are limited to that person. The issue of sperm, ovules or embryos is different, changes can be inherited. Not allowed in the United States, except for laboratory tests. China prohibits human cloning, but not specifically genes.
HEJ JEE -an-qway, who spoke about JK, studied at Rice and Stanford University in the United States. Before returning to his homeland, he opens a laboratory at the University of Science and Technology of Southern China in Shenzhen, where there are two genetic companies.
The American scientist who worked with him on this project after his return to China was Professor of Physics and Bioengineering Michael Deme, who is his advisor in Rice, Houston. Deem also has what he calls "little participation," and is part of the scientific council of two companies.
The Chinese researcher said he practiced a number of mice, monkeys and human embryos in the lab for several years and applied for patents for his methods.
He said he chose to test the embryonic gene for HIV because these infections are a major problem in China. He seeks to ban the gene called CCR5, which is a gate of proteins that allow HIV, the virus that causes AIDS, to enter a cell.
All men in the project had HIV and all women did not do it, but the editing of the gene was not meant to prevent a small risk of transmission, he said. Parents have infected deeply with standard anti-HIV drugs and there are easy ways to prevent them from infecting children that do not involve gene change.
Instead, the invitation was to offer couples affected by HIV an opportunity to have a child who could be protected by such a fate.
He has appointed couples through the Beijing-based AIDS advocacy group called Baihualin. Her leader, known as the Baj Hua alias, told AP that it is not uncommon for people with HIV to lose their jobs or have problems getting medical help if their infections are detected.
That's how it's done:
The gene delivery occurs during IVF or fertilization of the laboratory plate. First, sperm is "washed" to separate from semen, the liquid where HIV can hide. Single semen was placed in one egg to create an embryo. Then the gene editing tool was added.
When the embryos are 3 to 5 days old, some cells are removed and their editing confirmed. Pairs can choose whether to use edited embryos for pregnancy tests. A total of 16 of the 22 embryos have been published and 11 embryos have been used in six implant trials before the double pregnancy is achieved, he said.
The data show that one twin has changed both copies of the desired gene and the other twin has been altered without any evidence of damage to other genes, he said. People with a copy of the gene still can get HIV, although some very limited research shows that their health may decrease more slowly after doing so.
Several scholars have reviewed the material provided to the PA, and said the tests so far are not enough to say that the issue was working or to exclude the damage.
They also see evidence that the publication is incomplete and that at least one pair seems to be a mosaic of cells with several changes.
"It's almost like no editing anything," if only some of the cells were changed because HIV infection can still happen, the Church said.
The church and Mussundu questioned the decision to allow one of the embryos to be used in a pregnancy test because Chinese researchers said they knew in advance that both copies of the desired gene had not been altered.
"There was really nothing to be gained in this child with regard to HIV protection, yet he puts this child at risk for all unknown security risks," Mussundu said.
The use of this embryo suggests that the main focus of the researchers is "to test the problem instead of avoiding this disease," the Church said.
Even if editing works perfectly, people without normal CCR5 genes face greater risks of contracting other viruses, such as the West Nile, and die of influenza. According to Mussundu there are many ways to prevent HIV infection and is very treatable, if it happens, these other medical risks are a problem.
There are also questions about how he said he had gone on. He gave a formal notice of his work long after he said he had started this on November 8th in a Chinese Register of Clinical Trials.
It is not clear whether participants fully understand the purpose and possible risks and benefits. For example, consent forms have called the AIDS Vaccine Development Project.
Rice's scientist, Demem, said he was present in China when potential participants agreed and "absolutely" believed they could understand the risks.
Demem said he had worked with him to study the Rice vaccine and believed that the gene release was similar to a vaccine.
"This may be the way a simple peace-maker describes it," he said.
Both are physical experts with no experience in clinical trials in humans.
The Chinese scientist, He, said he personally made the goals clear and informed the participants that they had never tried to edit the embryonic gene before, and they had risks. He added that he would provide insurance coverage for each child conceived through the project and planned medical follow-up while children were 18 years old if they agreed to be adults.
Other pregnancy attempts are awaited while the safety of this is being analyzed and experts in this area but the participants have not been previously informed that they may not be able to prove what they have recorded once they have achieved the "first" pregnancy, he admitted. Free treatment of fertility is part of the treatment they have been offered.
He applied and received the approval of his project at Shenzhen Harmonikere Women's and Children's Hospital, which is not one of four hospitals, which he says have provided embryos for his research or his pregnancy attempts.
Part of the staff of some of the other hospitals remained in the dark about the nature of the investigation, which he and Demem said he was doing to prevent the detection of HIV infection by some participants.
"We believe this is ethical," said Lin Zhitong, director of Harmonicare, who heads the ethics panel.
Every medical staff involved in taking samples containing HIV is aware, he said. An embryologist at He's lab, Chin Dingzhou, confirmed to the AP that he had done the sperm washing and injected the gene-editing tool in some of the pregnancy tests.
The survey participants are not ethical, he said, but "they are so many authorities for what is right as what is wrong, because it's their life on the line."
"I think it will help families and their children," he said. If it causes unwanted side effects or damage, "I would feel the same pain as them and it will be my responsibility."