An ethical red line | Sunday Observer

An ethical red line

A major controversy has arisen in the sphere of science and technology with the news that ‘gene-edited’ babies have been born in China. Fears have been expressed for many decades that scientists could try gene editing techniques practised on plants and animals, on humans. Now that it seems to have happened, a hornet’s nest has been stirred.

The idea is a double-edged sword. Many question whether we have the right to ‘play God’ in altering the genetic make-up of an individual, which is a natural process. However, there is another school of thought – that where possible we should try to make ‘perfect babies’, who have no genetic deformities or defects and who will not get any major diseases. Both sides have a case so to speak, but somehow tinkering with the human genetic code is a barrier that sends a shiver down our collective spines.

Most countries have drafted laws against the editing of the human genome even at an experimental level. This is why the latest revelation has created a furore around the world. The Chinese researcher claiming to have led a team that genetically edited human babies is now under investigation, as well as an American professor who might have helped him.

He Jiankui, an associate professor at Shenzhen’s Southern University of Science and Technology in China, revealed his gene editing work to an organizer of an international conference on gene editing in Hong Kong. He has revealed that he altered the DNA of twin girls born this month to resist HIV and AIDS virus using the CRISPR (Clustered Regularly Interspaced Short Palindromic Repeats) techniques.

He also said, he has altered embryos for seven couples in fertility treatments, but only had one pregnancy result. However, no journal or independent source has verified He’s claim about genetic editing, a practice that is illegal in many countries.

CRISPR-edited babies

As first reported by the MIT Technology Review, the Chinese scientist He Jiankui claims to have made the first CRISPR-edited babies. “Two beautiful little Chinese girls, Lulu and Nana, came crying into the world as healthy as any other babies, a few weeks ago,” He said in the first of five videos, posted on YouTube. “The girls are home now with their mom, Grace, and dad, Mark.” The claim has yet to be formally verified, but if true, it represents a landmark in the continuing ethical and scientific debate around gene editing.

Late last year, He reportedly enrolled seven couples in a clinical trial, and used their eggs and sperm to create embryos through in vitro fertilization. His team then used CRISPR to deactivate a single gene called CCR5 in the embryos, six of which they then implanted into mothers. CCR5 is a protein that the HIV virus uses to gain entry into human cells; by deactivating it, the team could theoretically reduce the risk of infection. Indeed, the fathers in all eight couples were HIV-positive.

To compound the intrigue, the Shenzhen University said the school was unaware of the research, which violates its academic ethics. The school also said He is under investigation. He had been on leave since February 1 and wasn’t expected to return until January 2021.

Stricter regulations

Meanwhile, an American professor, Michael Deem of Rice University, is also being investigated by the United States because of his alleged involvement in He’s research. Since the expose, more than 100 scientists have signed a petition calling for stricter regulations around gene editing experiments. Many countries are now likely to take a closer look at universities which conduct genetic research.

This day has been feared for some time. Last year, Jennifer Doudna, one of the pioneers of the gene-editing technique CRISPR, which was apparently used by He, said: “I have mentally prepared myself for the day when I open my inbox or answer my phone and realize that somebody’s going to be announcing the first CRISPR baby.” It has now happened.

Controversial

But in a way, it was inevitable too. In 2015, Junjiu Huang of Sun Yat-sen University used CRISPR to edit human embryos, but only nonviable ones that could never have resulted in a live birth.

Last year, Shoukhrat Mitalipov of Oregon Health and Science University became the first to use the technique on viable embryos—but never actually implanted any of these into a woman.

Why is He’s work so controversial? Scientists have already begun using CRISPR and other gene-editing technologies to alter human cells, in attempts to treat cancers, genetic disorders, and more.

But in these cases, the affected cells stay within a person’s body. Editing an embryo is very different: It changes every cell in the body of the resulting person, including the sperm or eggs that would pass those changes to future generations. This is why many Governments have banned Genetically Modified babies.

Many other scientists and ethicists have already slammed He’s work, however groundbreaking it may be. Ethicists and watchdogs have already called his work “monstrous,” “unconscionable,” and “a grave abuse of Human Rights.”

The other factor, apart from the strictly moral outrage, is the fact that CRISPR is still not perfect, at current level of genetic engineering. Many things could still go wrong and a baby which has other deformities or abnormalities could be born.

But this does not mean that we should shun genetic engineering altogether. Just as plant genetic technology has given disease and drought resistant crop varieties and bigger harvests, human genetic engineering may help prevent certain diseases. Huang, the first Chinese researcher to use CRISPR on human embryos, targeted the faulty gene behind the inherited disease beta thalassemia.

Other scientists, likewise, tried to edit a gene called MYBPC3, whose faulty versions cause another inherited disease called hypertrophic cardiomyopathy (HCM).

Such uses are still controversial, but they rank among the more acceptable applications for embryonic gene editing as ways of treating inherited disorders for which treatments are either difficult or nonexistent. If science can provide an answer to such issues, there is no harm in trying them out.

Genetic engineering

If the whole episode is true, a new line has been crossed in genetic manipulation and engineering. Governments and universities around the world may now wish to restrict the more adventurous types of genetic experiments, especially, with regard to human subjects.

But this may also stymie the more beneficial research programs into genetic engineering, like the ones outlined above as scientists will be unable to identify an ethical borderline per se.

Genetic engineering is not the devil it is often portrayed to be, but scientists should exercise extreme caution in dealing and tinkering with the very cells that make us all.

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