An advisory panel to the World Health Organization (WHO) has called for the creation of a global registry to monitor gene-editing research in humans. The recommendations of the 18-person committee are aimed at improving transparency and responsibility in the field. An advisory committee did not recommend banning human gene-editing research, but researchers will have to register with the government before beginning an experiment.

The WHO Expert Advisory Committee on Developing Global Standards for Governance and Oversight of Human Genome editing was established after the birth of the first gene-edited babies. A Chinese scientist, He Jiankui, genetically altered human embryos and implanted them into a woman who gave birth to twins in 2018. He performed unpublicized genetic experiments.

His work has raised many questions among researchers, ethicists, policymakers and the general public. Many fear that the technology could be misused to create “designer babies” genetically altered to heighten physical features, intelligence or athletic prowess. Furthermore, we still know very little about the safety and health effects of editing the genome of a human embryo.

The first committee meeting was held on 18th-19th of March in Geneva, Switzerland.

“Gene editing holds incredible promise for health, but it also poses some risks, both ethically and medically,” WHO Director-General Tedros Adhanom Ghebreyesus said in a press statement.

What is missing in this field of research are international, clear guidelines and a system to monitor such research. WHO recommendations have parallels with the way clinical research is currently managed in the US. Scientists have to seek approval from regulatory bodies in advance and are required to publish updates to their studies in a publicly-accessible database.

“This committee is a perfect example of WHO’s leadership, by bringing together some of the world’s leading experts to provide guidance on this complex issue. I am grateful to each member of the Expert Advisory Committee for their time and expertise,” said Ghebreyesus.

Some scientists want a temporary moratorium on all human germline editing research. Recently, a group of scientists and bioethicists from seven countries penned a commentary in Nature that argued for “a fixed period during which no clinical uses of germline editing whatsoever are allowed.” One thing is certain, an ethical and moral debate, and an international regulatory framework should be imperative.

“The committee agrees that it is irresponsible at this time for anyone to proceed with clinical applications of human germline genome editing,” committee co-chairwoman Margaret Hamburg said in a press briefing.

The phrase “germline” refers to the modification of genetic traits that may be handed down to future generations, according to Dr. Hamburg. The proposed registry should increase accountability of scientific researchers. The committee has proposed that WHO create the registry as soon as possible.

“This could make a very important difference and will really increase transparency,” said Dr. Hamburg.

The WHO committee has determined some of the steps it intends to take. These recommendations may change because a panel of experts intends to investigate human gene-editing over the next two years. Their goal is to come up with a finalized set of international standards and prevention of rogue uses of genome editing.

“Technologies are just moving so fast, so we think it’s really very important for us to engage with the scientific community,” Dr. Vasee Moorthy, a scientific adviser to the WHO, said at the briefing. “Really, the long-term vision is to accelerate the benefits for people around the world while reducing risk.”

The science of editing genes is varied and complex. Learn more about it in the video below:

By Andreja Gregoric, MSc