Global quest for gene-editing rules

After a Chinese scientist created the first gene-edited babies, a UN agency rushes to set standards on the technique – based on values that don’t derive from genes.

Gene-editing in a laboratory in Shenzhen, China, during work by scientist He Jiankui's team.

AP

February 26, 2019

The world’s scientific community readily accepts regulation of its research for safety reasons. But not always to meet a moral standard. That may soon change. In March, the World Health Organization will convene a panel of 18 experts to examine the ethical and social challenges of editing genes for the purpose of reproduction.

In effect, the panel is tasked to come up with global guidelines on what it means to be human. In particular, the United Nations agency wants to decide whether science should continue perfecting gene-editing techniques that allow the choosing of physical or mental characteristics before a child is born.

WHO set up the panel with some urgency. In November, gene researchers across the world reacted with horror after a Chinese scientist, He Jiankui, announced he had created the first gene-edited babies. Some called the achievement “monstrous.” Others demanded a red line to allow such gene editing only when it is clearly safe and only for an agreed purpose, such as preventing illness. Mr. He, meanwhile, remains under house arrest as he awaits trial for allegedly violating Chinese law.

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The good news is that WHO is acting as if humanity needs a global standard and can enforce it. This is an acknowledgment that universal values are at stake. Taking such a high stance fits the findings of a study by the University of Oxford, released in February, that looked at 600 societies around the world. “People everywhere face a similar set of social problems, and use a similar set of moral rules to solve them,” said anthropologist Oliver Scott Curry, the study’s lead author. “Everyone everywhere shares a common moral code.”

WHO’s hope for a standard may help lift the debate toward a higher understanding of life. Humans are not just another animal species. Together they have the capacity to discover principles that transcend the notion that each individual’s well-being must be based on physical attributes.

WHO is not alone in this task. In the United States, the National Academy of Medicine and the National Academy of Sciences joined with the Chinese Academy of Sciences in December and pushed for international gene-editing standards. In a joint statement, the leaders of the three organizations called on researchers “to take steps now to demonstrate that this new tool can be applied with competence, integrity, and benevolence.”

Applying qualities like integrity to questions about designing babies in a lab clearly takes the issue out of the realm of science. The WHO panel, in fact, includes nonscientists, such as a court judge from South Africa. The nonmedical experts will help bring views that can build a better consensus for shared norms on gene editing.

In the late 1990s, the US went through a similar debate after researchers unveiled news about Dolly the sheep, the first clone of an adult animal from a differentiated cell. President Bill Clinton set up a national advisory commission to explore the moral and spiritual aspects of human cloning. One poll found 77 percent of Americans said human cloning is against God’s will. At the same time, WHO’s governing committee declared such cloning to be “ethically unacceptable.”

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In its coming deliberations, the agency’s panel of experts must be as transparent, reasonable, and accountable as it would expect gene researchers to be in their work. The right values will help inform the moral conclusions about whether or when to alter human genes. This approach relies on the fact that goodness is expressed by each individual, regardless of genes. The desire for the humanity-wide standards shows people are greater than any trust in DNA as life’s determinant.