Gene-modified babies violate scientific ethics and process

Sadly, it was only a matter of time before a scientist somewhere outside the United States claimed to have created the world’s first genetically altered human babies.

That’s not because scientists in the United States lack the know-how to tweak the genes of babies in the womb. It’s because those same scientists are governed by laws, regulations, and ethical standards that would prevent them from doing so.

That distinction is important to understand as advancements in genomics, some of which are taking place in Wisconsin, lead to more personalized therapies for treating and curing killer diseases.

He Jiankui of China’s Southern University of Science and Technology shocked the scientific world in late November when word got out he had edited the genes of twin girls while they were embryos, explaining it was done to protect them from contracting the HIV virus. Researcher He basically bypassed scientific norms that call for subjecting his experiment to review by peers.

As a result, He was called on the carpet at the second annual International Summit on Human Genome Editing in Hong Kong, most vociferously by a UW–Madison bioethicist who was around for the dawn of human embryonic stem cell research 20 years ago and who helped to organize the summit.

Alta Charo, who holds appointments in both Wisconsin’s law school and medical school, is a leading American authority on bioethics. She called He’s experiment “misguided, premature, unnecessary, and largely useless” — and that was just for starters.

“The children were already at virtually no risk of contracting HIV, because it was the father and not the mother who was infected,” Charo noted.

“The patients were given a consent form that falsely stated this was an AIDS vaccine trial and which conflated research with therapy by claiming they were ‘likely’ to benefit,” Charo said. “In fact, there is not only very little chance these babies would be in need of a benefit, given their low risk, but there is no way to evaluate if this indeed conferred any benefit.”

Other scientists have chimed in along the same lines in hopes of policing their own. When a scientist like China’s He goes rogue, it poisons the well for legitimate, peer-reviewed researchers everywhere, which is why most of the world’s scientists abide by rules and processes that value ethics as much as efficacy.

Science is generally governed by the notion that just because something can be done, it doesn’t mean it should be done. When those norms are violated, most scientists understand, it invites more regulation from the outside that can slow or halt useful research.

That’s true even in China, where a group of 122 Chinese scientists issued a statement calling He’s actions “crazy” and his claims of having altered the embryos’ genes “a huge blow to the global reputation and development of Chinese science.”

In fact, researcher He is facing investigation by a medical ethics board in Shenzhen to see if he broke the law. The Chinese university has placed He on unpaid leave.



How was the gene editing done? By using a gene-editing technique called CRISPR, which enables scientists to make precise changes in DNA. The technique is changing how research is done at institutions such as the UW–Madison and could lead to significant breakthroughs.

In fact, the UW–Madison’s program for advanced cell therapy aims to develop personalized cell therapies for immune and malignant disorders. It will follow protocols set by the university and the federal government in finding ways to test cell therapies that work in adults and children, using the patient’s own cells and tissues.

Until now, however, scientists have refused to open the Pandora’s box of cell manipulation in embryos. The reasons are practical as well as ethical. For example, such changes could be passed down from one generation to the next or open the door to “designer babies” that are modified for non-medical reasons, such as being taller or stronger.

The scientific world hasn’t reached consensus on how to safely and ethically edit embryos, nor is it sure it should be done at all. This is one Pandora’s box that should remain shut for now.

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