Gene-editing: Technically feasible, ethically undesirable?

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Published: January 13, 2020 12:16:38 AM

Part of that was perhaps because Chinese scientists are aware of the scepticism with which the West looks at research standards in China.

The fact is, each day, CRISPR-Cas9 is being tested for newer applications in disease control—from cancer to sickle cell anaemia to blood disorders.The fact is, each day, CRISPR-Cas9 is being tested for newer applications in disease control—from cancer to sickle cell anaemia to blood disorders.

China has jailed biophysicist He Jiankui, who created the world’s first gene-edited babies. Jiankui used CRISPR-Cas9 to edit the gene that coded for a protein allowing a particular HIV form to enter the human cell. The genome-edited pair of embryos were later borne to term. Almost immediately after He made the announcement in November 2018, there was backlash. Senior researchers from all over the world poured scorn on He and his collaborators—two of his colleagues have been handed shorter prison sentences—but the worst came from his Chinese peers. Part of that was perhaps because Chinese scientists are aware of the scepticism with which the West looks at research standards in China. A handful supported He. But, in the end, a Chinese court found He guilty of flouting regulations and medical ethics in his search for “fame and profit”. He and the other two are also banned from work in human reproductive technology in China and can’t apply for government research funding. US scientists, including one from Rice University, who was reportedly involved in the research, and some others from Stanford who were investigated by the university, haven’t faced any reprisals.

At the time of He’s announcement, scientists had said that gene-editing technology was nascent and shouldn’t have been used for reproductive purposes, more so, given the risk of introducing unintended mutations. Besides, the babies were not at high risk of contracting HIV. There have been calls from both, the academia and the policymakers, for a moratorium on gene-editing in reproductive technology. He’s sentencing sends out a clear messages to researchers in the country—zero tolerance for any research, even if it is pioneering, if there is a ethical question that could crop up because of it. The handling of the matter by China—in the run up to the trial, discussions about the experiment on social media were widely censored, signalling the country not only treated the experiment as an embarassment, but also wanted to nip the chance that favourable views could consolidate into some sort of show of support right in the bud—shows that the government is keen on shielding research in the country from doubt or distrust from the West.

Apart from the signal to scientists at home, He’s sentencing is also perhaps China throwing down the gauntlet to the Western democracies. It is almost like it is telling the US, the UK and European nations, where the criticism of the He’s experiment was strongest, that they too should conform to similar standards on ethics in genome-editing and other controversial research areas. To be sure, it is completely up to countries to decide on how to regulate such emerging technologies that could shift the paradigm. But, the fact is at the first international meet on human gene-editing, held in Washington in 2015, a voluntary global moratorium on reproductive application of gene-editing—until “a broad societal consensus” had been achieved on scenarios where such modification was ethically acceptable—was proposed.

There exists no formal consensus today, on whether to go forward or refrain from it. And, researchers are locked in an unacknowledged, but quite real race towards a “famous first”, which, of course, unlocks celebrity-status and commercial gains through licensing and patents. In 2017, US researcher Shoukrat Mitalipov shot into limelight after creating nearly 100 viable human embryos for gene-editing—the scientific community and the policymakers in that country looked the other way because the altered embryos were neutralised. But, it will be very difficult to say that treating Mitalipov’s research as kosher couldn’t have encouraged others elsewhere to push the boundaries of what is acceptable.

The fact is, each day, CRISPR-Cas9 is being tested for newer applications in disease control—from cancer to sickle cell anaemia to blood disorders. China’s Sichuan University demonstrated its use in therapy for lung cancer. And, all this research is necessary, considering the knockout it could deliver to some genetic diseases that have long plagued humans.

The question now is what should mankind choose: should we go with the “not everything that is technically feasible is ethically desirable” line of the French National Ethics Committee, or is Arthur Caplan, bioethicist at NYU’s School of Medicine, who was quoted by New York Times as saying, “There are many cultures in the world, including the US, that are highly competitive, market-driven societies where individuals are looking for their children in particular to get an edge and advantage. This idea that we’re not going to do gene editing when it gets close to enhancement or improvement, I find it silly and head-in-the-sand kind of stuff” Indeed, won’t future parents be considered negligent if they don’t choose the option even if its safety is demonstrated?

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