Two reports released this week by the World Health Organization (WHO) offer a pathway to establish human genome editing as a safe, effective and ethical tool for public health.
The reports were commissioned after the shocking 2018 announcement that Chinese scientist He Jiankui had used CRISPR to modify embryos that led to the birth of two girls. This was treated as an outrageous scandal by scientists around the world and He was jailed.
However, it is not the principle of He’s experiment that was repudiated, but only the practice. It was clearly not safe and he had not followed established protocols.
The WHO recommendations are effectively an endorsement of inheritable human genome editing. As Peter Mills, of the UK’s Nuffield Council on Bioethics pointed out: “any statement that includes the phrase ‘at this time’ need not necessarily apply tomorrow.”
“Human genome editing has the potential to advance our ability to treat and cure disease, but the full impact will only be realized if we deploy it for the benefit of all people, instead of fueling more health inequity between and within countries,” said Dr Tedros Adhanom Ghebreyesus, WHO Director-General.
WHO says that the potential benefits of human genome editing include faster and more accurate diagnosis, more targeted treatments and prevention of genetic disorders. It could also vastly improve treatment for a variety of cancers.
The WHO reports include recommendations on the governance and oversight of human genome editing in nine discrete areas, including human genome editing registries; international research and medical travel; illegal, unregistered, unethical or unsafe research; intellectual property; and education, engagement and empowerment. The recommendations focus on systems-level improvements needed to build capacity in all countries to ensure that human genome editing is used safely, effectively, and ethically.
“These new reports from WHO’s Expert Advisory Committee represent a leap forward for this area of rapidly emerging science,” said WHO’s Chief Scientist, Dr Soumya Swaminathan. “As global research delves deeper into the human genome, we must minimize risks and leverage ways that science can drive better health for everyone, everywhere.”
The California-based Center for Genetics and Society, a critic of genome editing, welcomed WHO’s call for strict government oversight.
“The WHO reports should serve as a wake-up call for those who think that heritable genome editing can be controlled through professional guidelines that scientists or fertility doctors set up behind closed doors – or by countries vying for technological ‘firsts’,” said its director, Marcy Darnovsky. “Without robust and inclusive public engagement, global cooperation, and enforceable policies, we’re headed down a path toward shady offshore CRISPR-baby clinics offering ‘upgraded’ genomes to those who can afford them. Heritable genome editing can play no part in a fair and inclusive global future.”
Michael Cook is editor of BioEdge
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