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A committee of experts working with the World Health Organization on Monday urged the world’s nations to set stronger limits on powerful human gene-editing methods.
They recommendations made after two years of negotiationaims to thwart pseudoscience experiments with the human genome and ensure that the proper use of gene-editing techniques is beneficial to the wider public, not just the wealthy, but especially people in developing countries.
D., a Harvard University gene therapy expert and not a member of the committee, but described it as a “thoughtful group.” “I’m very supportive,” said Leonard Zon. He said the recent gene-editing results were “impressive” and that the committee’s recommendations would be “crucial for future therapy.”
The guidelines proposed by the WHO committee were largely guided by the case of He Jiankui, a scientist in China. stunned the world in November 2018 When he announced that he had modified the DNA of human embryos using CRISPR, a technique that allows for precise editing of genes. Such changes meant that any change in genes would be copied in every cell of the embryo, including sperm and egg cells. This meant that the changes, even if they were more harmful than beneficial, would occur not just in babies born after gene editing, but in every generation their DNA was passed on.
Dr. He’s goal was to alter the DNA of babies so that they do not genetically transmit HIV from their parents. A court in China has ruled that experiments that don’t understand what a gene-editing experiment is forgetting ethical papers and mislead subjects. he was convicted three years in prison in December 2019.
The realization of such an experiment, known as germline editing, raised the question of how to control gene editing and make sure it was used to benefit humans.
WHO standards, Dr. He says it’s unacceptable for He to use germline editing and it’s irresponsible to even consider using it now. But other types of gene editing are a different story.
Scientists are already trying to edit the gene to correct the mutation that causes sickle cell disease. The edited gene will be in the blood-forming bone marrow cells of people with the disease, not sperm or egg cells, so the changes will not be passed on through generations. But even this use of CRISPR raises other questions.
The WHO committee described an invented scenario where researchers from a wealthy country wanted to conduct a clinical trial of sickle cell gene editing in sub-Saharan Africa, where the disease is common. If the trial is successful, gene-editing therapy will be very expensive for all but a very small number of citizens of the country where it will be tested.
Another hypothetical case involves a gene-editing trial to correct a gene mutation that causes Huntington’s disease, a progressive brain disorder. People who inherit the mutated gene will develop Huntington’s disease with absolute certainty. If the gene-editing experiment is successful, it could save them from this terrible disease. And since the regulation does not include sperm and eggs, the changes will not be inherited.
But it will take years or even decades to know whether genetically engineered study participants are protected from Huntington’s disease. Participants would not be able to shake off the dreaded fear that they might develop the deadly brain disease despite gene editing.
In such a scenario, the WHO group asked if there were faster ways to evaluate the effectiveness of treatment. He also suggested that researchers consider the psychological burden on participants who were left in hopes of their recovery, but not knowing for sure.
The committee said gene editing is here, and it holds so much promise. WHO has launched a registry of ongoing studies and says it includes 156 experiments involving genes not currently found in sperm or eggs.
The WHO committee stressed that every country should have guidelines in place to ensure that research is conducted ethically and with appropriate oversight, and in conditions that ensure access and social justice. While the costs of treatment were expected to be very high, at least at first, the group said, the goal should be to ensure that the benefits of gene editing accrue equally to people around the world.
“It’s not an easy challenge,” said Françoise Baylis, a committee member and researcher in medical ethics at Dalhousie University in Halifax, Nova Scotia.
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