A World Health Organization expert advisory panel Monday issued two new reports recommending the implementation of global standards aimed at preventing unscrupulous, inequitable and potentially dangerous uses of Crispr and other gene-editing technologies.
The reports call for efforts to develop global standards, the establishment of an international registry of gene-editing experiments and a way for whistleblowers to report concerns. Their release comes more than two years after a Chinese researcher triggered international outrage when he revealed that he had used Crispr to produce the first gene-edited babies.
The committee, made up of ethicists, policy makers and lawyers, said in the reports that the use of gene editing had evolved dramatically since they set out in December 2018 to develop a governing framework and that recent successes in altering the DNA of people with lethal diseases had opened up ethical challenges.
The reports described several scenarios that the proposed strategies might help prevent, including conducting gene-editing trials in low-income countries to develop therapies that would ultimately be too costly for all but the wealthiest ones to buy; unscrupulous clinics offering unsafe or ineffective gene-editing services to people desperate to overcome potentially life-threatening conditions; and the use of gene editing for enhancing traits such as athletic ability.
“We want people to look at what is happening now and what we need to do to shape the way the research will proceed,” said committee member
Françoise Baylis,
a professor at Dalhousie University in Halifax, Canada, and an expert on the ethics of human gene editing.
At a press conference on Monday in Geneva, WHO Chief Scientist Dr. Soumya Swaminathan said that given how rapidly the landscape is changing, she expected WHO to review the recommendations in no more than three years “to see what has changed and if things are getting better.”
The WHO committee isn’t the first to weigh in on the use of gene editing for altering human eggs, sperm or embryos—known as germ-line editing—or for repairing faulty DNA in people with lethal diseases such as cancer and sickle cell anemia, an inherited blood disorder.
Chinese researcher He Jiankui announced in late 2018 that his research had led to the birth of human twins from embryos whose DNA had been altered with the Crispr technology.
Photo:
Mark Schiefelbein/Associated Press
Last year, an international commission, sponsored by the U.S. National Academy of Medicine, the U.S. National Academy of Sciences and the U.K.’s Royal Society, issued a report stating that gene editing is still too risky to use in human embryos. Even after the technology advances, the report concluded, it should be limited initially to the most serious conditions.
Jeffrey Kahn,
director of Johns Hopkins Berman Institute of Bioethics and a member of the commission that published last year’s report, praised the new reports for laying out issues that need to be addressed, but said countries couldn’t necessarily be counted on to cooperate. “It is still a very open question in my mind of who is responsible for doing it, and who is going to step up,” Dr. Kahn said.
The WHO advisory panel was set up in late 2018 after Chinese researcher He Jiankui announced that his research had led to the birth of human twins from embryos whose DNA had been altered with the Crispr gene-editing technology. Dr. He was found guilty in 2019 in a court in China of conducting illegal medical practices and sentenced to three years in prison.
Little is known about the twins or a third child born through Dr. He’s experiment.
More recently, Crispr reached some remarkable milestones. Scientists reported last December that gene-edited cells curbed severe pain and other symptoms in patients with two rare inherited blood disorders. Last month, researchers reported that they had achieved reductions in levels of a disease-causing protein in six patients with an inherited liver disorder. Other gene-editing clinical trials, including for cardiovascular disease, are in the works.
In the new reports, the committee acknowledged that it cannot impose the proposed standards and that the successful implementation of a system for reporting potentially unethical experiments would require “a cultural change.” A number of the suggestions, including support for a newly established registry to track gene-editing trials and a proposed new registry focused on gene-editing research studies, will require WHO and other organizations to provide additional financial and staffing resources while countries are still combating the Covid-19 pandemic.
But Dr. Baylis said such steps are required to ensure human gene editing is applied equitably. Otherwise, she said, “the benefit of science and technology will go to an elite group and other people will be systematically disadvantaged. There needs to be an orientation to the public good.”
The Ethics of Gene Editing
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Write to Amy Dockser Marcus at [email protected]
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