"It's totally irresponsible": a Canadian ethicist denounces the Russian plan to mount human embryos

Bioethicists and genetic experts in Canada are opposed to Denis Rebrikov, the Russian molecular biologist who contemplates – in defiance of international scientific standards – to alter human embryos with the help of advanced technology. edition of CRISPR genes to allow future parents with genetic deafness to conceive a child.

"We are setting ourselves on the path to change the history of human evolution. This is not up to the height of a scientist. It's not a group of scientists or a group of political elites. It's our task, "said Francoise Baylis, professor of philosophy and bioethics at Dalhousie University, a member of a World Health Organization committee that is developing global standards and oversight for editing of the human genome.

Baylis explained that the ethical implications of this kind of disordered science are broad and nuanced. But the most obvious are terrible: genetic modifications of eggs, sperm or early embryos, collectively called human germline, affect not only the person that these cells could become, but also their offspring.

Although scientists and ethicists have a "wide range" of opinions on whether germline modification will be a good idea, Baylis said, there is a strong consensus that it is not yet close to being safe, effective or reliable. Many of our genes have multiple functions, so their modification could have unpredictable results. In addition, there is a very real spectrum of "untargeted effects" – accidental, potentially devastating changes in genes that the scientist intended to leave alone.

In fact, the only other attempt to modify human embryos with CRISPR did not work as expected. The result of an entrenched and secretive editing project of the germline of the disgraced Chinese geneticist, He Jiankui, would have resulted in the birth of binoculars last November. His intention was to modify a gene called CCR5 in order to confer resistance to HIV. Instead, one of the twins seems to have mosaicism – some of his cells have modified genes, others do not. The other girl has the planned change in a single copy of the gene. It is not clear yet what other effects the changes might have. (A second pregnancy with an embryo published by CRISPR was reported last year, but it is not known if this resulted in a live birth).

The situation in Russia is somewhat different. Rebrikov, the scientist, said New scientist he has recruited five couples in which each partner has two copies of a mutation of a gene called GJB2, a common variant in western Siberia. People with only one copy of the mutated gene carry the trait, but those with two copies are deaf from birth. If two people with this type of deafness get together, their children will also be deaf.

The Chinese and Russian projects have in common to be fundamentally useless, said Baylis. They respond to a "desire" – to make a "cool science", to be the first – not a real medical need.

There are healthy ways to prevent HIV without taking such drastic measures. Likewise, the vast majority of people who wish to have a healthy child, but who have a genetic disease in the family, can achieve this goal with current genetic technologies. The most important of these is preimplantation genetic diagnosis, in which prospective parents undergo in vitro fertilization and then choose only to implant embryos that do not have the trait that causes the disease.

Only a tiny, tiny minority of people suffer from the same type of genetic problems as GJB2-related deafness, in which the target parents can not naturally produce a child without the trait that preoccupies them. But the desire to be the biological parents of a child capable of hearing is a desire, not a need, and does not deserve the risk of such a dangerous and untested medical procedure, said Baylis. She also claims that this work removes "the time, talents and wealth" of science, offering a much greater potential for gains for society.

Although the vast majority of traditional scientists and ethicists vehemently oppose the short-term edition on the human germ line – only a few "transhumanist" types interested in increasing the number of people in the world. Human species are excited about this language used to describe the potential future impact of altering the human germline. The talk is that CRISPR could eventually be a "cure" or "cure" for various genetic diseases. But, in his opinion, this is not the right way of thinking.

"Embryos are not people yet. They are not patients. They do not to have "To exist," said Baylis, and treating them like flies, "all the reproductive choices for which women have fought long and hard."

Many of our genes have multiple functions, so their modification could have unpredictable results

The Russian project is further complicated by what it implies about the nature of deafness – that it is a disease to heal and eliminate, rather than a valuable form of human variation. Some of the ethical issues surrounding plans to eliminate the human genome from hearing loss will be examined in a forthcoming article in Impact Ethics, a Canadian academic publication on bioethics. The authors are Teresa Blankmeyer Burke and Jackie Leach Scully, two academics from the deaf community. We expect to go out this week.

Baylis is not opposed to the future use of CRISPR on embryos, under very specific conditions. It must be proven that it is highly safe and effective and that there must be a "general consensus of society" on its ethics. Baylis said the consensus should be broad and encompbad a range of perspectives from marginalized groups such as people with disabilities.

"It's totally irresponsible (on Rebrikov's part) to make fun of the international community when it is very clear that scientists, policymakers and ethicists are concerned globally," she added. "Instead, it's" Here's this really cool thing to do and I'm going to do it. "