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WHO committee takes first step toward governance on human genome editing
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Today, a WHO expert advisory committee held its first meeting in developing a strong governance framework for human genome editing for use at the international, regional, national and local levels, calling for transparency, inclusivity and responsibility.
Governance for human genome editing
“Gene editing holds incredible promise for health, but it also poses some risks, both ethically and medically,” Tedros Adhanom Ghebreyesus, MD, director-general of WHO, said in a press release.
The WHO expert panel reviewed the present state of human genome editing science and technology and made great progress in how to move forward in the short- and long-term, Margaret A. Hamburg, MD, co-chair of the WHO expert advisory committee on developing global standards for governance and oversight of human genome editing, said during the press briefing.
“The committee agreed on a set of core principles that underpin this first set of recommendations: transparency, inclusivity and responsibility,” she said.
“One urgent need is for WHO to create a registry for human genome editing research such that studies being done using these technologies would be registered with WHO in a transparent way that is accessible to all interested parties,” she added.
A registry would increase accountability of researchers and improve transparency, she said.
Creating a governance will be a long process and it is important that it is done in a thoughtful and comprehensive way, Hamburg said. The committee will consult with multiple stakeholders over the next 2 years to create a robust governance framework, she said.
“There is much more work to be done, but it is an exciting first start ... in developing a framework and oversight of human genome editing,” Hamburg said.
Call for a global moratorium
The WHO committee meeting comes shortly after several scientists and ethicists from seven countries called for a global moratorium on all clinical uses of human genome editing last week. The authors of the proposal, published in Nature, specified that the moratorium should not be a permanent ban but should provide time for nations to establish an international framework and discuss the technical, scientific, medical, societal, ethical and moral issues that need to be addressed before genome editing is permitted.
The moratorium would not apply to using genome editing for research purposes, as long as it does not involve modifying an embryo, or to treating diseases in patients who can provide informed consent, according to the authors.
During the press briefing, however, Hamburg stated that a “vague moratorium” is not the answer.
“What we are trying to do is to look at the broader picture and how there can be a framework for responsible stewardship,” she said.
The call for the moratorium comes after a Chinese researcher used genome editing to alter the DNA of twin girls to make them resistant to HIV, according to the authors.
The NIH published a commentary, also in Nature, in support of a moratorium on the clinical uses of human genome editing.
“This is a crucial moment in the history of science: a new technology offers the potential to rewrite the script of human life,” Carrie D. Wolinetz, PhD, associate director for science policy at the NIH, and Francis S. Collins, director of NIH, wrote. “We think that human gene editing for reproductive purposes carries very serious consequences — social, ethical, philosophical and theological. Such great consequences deserve deep reflection.”
“A substantive debate about benefits and risks that provides opportunities for multiple segments of the world’s diverse population to take part has not yet happened,” they added. “Societies, after those deeper discussions, might decide this is a line that should not be crossed. It would be unwise and unethical for the scientific community to foreclose that possibility.”
Presently, the benefits of genome editing are significantly outweighed by the risks due to severe safety issues, ethical concerns and lack of adequate medical applications, according to Wolinetz and Collins.
“Gene editing has enormous potential ... to advance science and save lives,” Wolinetz and Collins wrote. – by Alaina Tedesco
Reference:
Lander ES, et al. Nature. 2019;doi:10.1038/d41586-019-00726-5.
Wolinetz CD, Collins FS. Nature. 2019;doi:10.1038/d41586-019-00814-6.
Disclosures: Healio Primary Care Today was unable to confirm relevant financial disclosures prior to publication.