Gene Editing: Questions of Ethics and Standards

Researchers at the University of Pennsylvania stood poised in early 2018 to begin an experimental human trial using gene-editing tools to change the makeup of immune cells, which would in turn equip those cells to do battle with three different forms of cancer.

The study was to include upwards of 18 patients with sarcoma, myeloma, and melanoma cancers, and was believed to be the first human trial in the U.S. using CRISPR – a ten-year old technology that can change the DNA of living things. Chinese scientists had already used CRISPR on a human in 2016, and had also carried out a second human trial in 2017.

Then, near the end of 2017, a Chinese scientist claimed that he had created the “world’s first genetically edited babies”.

Suddenly, talk about gene editing quickly moved from the possibilities about fighting cancer to the problems over creating so-called ‘designer babies’.

The Telegraph reported that some scientists decried the news from China as amounting to human experimentation; the kind of gene editing performed by researcher Dr. He Jiankui of Shenzhen is banned in the United States because changes made to DNA can be passed to future generations and can also damage other genes.

Dr. He reportedly changed embryos for seven couples as part of fertility treatments, with one pregnancy having resulted up to this point. His goal: To impart a trait that very few people currently possess – the ability to fight potential infection from HIV, the virus which causes AIDS.

"I feel a strong responsibility that it's not just to make a first, but also make it an example," Dr. He told The Telegraph. "Society will decide what to do next".

Far as the Chinese government was concerned, what happened next was a swift ban on research involving gene-edited babies. According to the Associated Press, a government spokesperson told state broadcaster CCTV that the Ministry of Science and Technology was against the work that had resulted in the birth of twin girls, and had ordered an investigation.

A group of prominent scientists meeting in Hong Kong for a conference on gene editing published a statement that denounced using the process on sperm, eggs, or embryos – other than as part of lab research – because of how little is known with regard to safety or risks.

A New York Times article claimed that the real reason that scientists were concerned about the world’s supposed first CRISPR babies was because one lone researcher wound up defying a host of ethical and scientific guidelines and norms.

The newspaper went on to note that changing genes in an embryo involves changing the genes in each and every cell – a process that creates alterations inherited by succeeding generations. Which, naturally, is quite a serious matter portending myriad ethical implications.

But the Chinese researcher, Dr. He, disabled a normal gene. And he also claimed that the CRISPR process he used didn’t affect other genes – an assertion the Times says can’t be known for certain.

As was to be expected, pundits all over the world continued to weigh in regarding the news that gene-edited babies had been successfully created.

The Independent newspaper pointed out that one reason why the debate over gene editing and babies is so intense is because there has yet to be agreement over what constitutes an acceptable clinical trial.

An op-ed published in The Conversation stated unequivocally, “[W]e cannot allow individual scientists to decide the fate of the human genome”. To do so, the publication argued, could pose a major threat to human existence because the changes created by the editing could plague humankind for generations to come.

Potential ills with which to deal could include possible mutations or even forced sterilization. The former pose health risks that “cannot be overstated”, while the latter could result in order to prevent edited genes from being inherited by one’s progeny.

A report from Gizmodo indicated that “an undisclosed number of Chinese cancer patients who have undergone experimental gene therapies” were not being properly tracked as a scientific community would expect.

Obviously, a great deal more needs to be known about gene editing, particularly as it relates to its effects on sperm, eggs, and embryos. Concerns that any such processes must be codified and overseen by scientific communities, and not individuals, are well founded.

While the debate rages on, and discoveries continue to be made, the Legacy man can safeguard his most valuable assets now – a wise choice in any era.