World’s First Gene Edited Twin Babies: How Ethical is This?

The proclaimed gene editing done on twins by a Chinese scientist last week has sparked a prolific debate across scientific communities. The scientist has claimed that he was able to do gene modification in the genomes of the two twin baby girls aimed at making them resistant to HIV infection. The alterations made in the genomes would have the capacity to get passed on to the future generation. But the questions that arise are—is research of this kind ethically supportable? Is gene editing an immensely important way that humanity should thrive on?

The claim, made by He Jiankui of Southern University of Science and Technology, Shenzen, China, is yet to appear as a scientific paper and has invited sharp criticisms from scientists and bioethicists—some of them calling it “premature”, “ethically problematic” and even “monstrous”. His university has immediately issued a statement saying that it had launched an investigation into the research. The statement says that the research may seriously violate academic ethics and academic norms. The Chinese Society for Cell Biology has also issued a statement declaring that the research is a serious violation of the Chinese government’s law and regulations and the consensus of the Chinese scientific community.

He Jiankui’s Work

He Jiankui, as told to The Associated Press (AP), introduced a change in the genome of the embryo during very early period of fertility treatment by using the CRISPR-Cas9 technique. In this process He aimed to introduce a natural variant of genetic material that potentially makes the human immunodeficiency virus (HIV) difficult to attack its favourite target, the white blood cells. He, using the gene editing technique, deleted a portion of the white blood cell called the CCR5 region. This region is where the HIV prefers to bind.

He altered the embryos of seven couples with the father infected with HIV and the mother HIV negative. Among his experiments, one pregnancy resulted so far and the twin babies were born.

What Makes He’s Work Problematic

Use of CRISPR Cas9 technique in treating genetic diseases, such as muscular dystrophy, sickle cell anemia etc. is not new. One long running study in HIV infected adults has also cut the CCR5 region, but with the other form of genome editing technique. But all these instances involve editing of the genes in somatic level.

Somatic cells genes don’t get transmitted to future generations. Genetic information only gets passed through the germ line cells—the egg cells and the sperm cells. Any genetic modifications done in these types of cells get transmitted to the progenies.

He’s work has made the changes in the level of germ line genes, which means the changes will be inherited and passed on. Genetic modification in the germ line level involving human subjects is banned in the US and several other countries.

He put a series of videos on YouTube where he justified his work saying that it was necessary for humanity to save itself from deadly diseases.

The National Institute of Health, US, has brought out a statement where it declares the work as a profoundly unfortunate, ill considered, an epic scientific misadventure that flouted international ethical norms and was carried out in secret with utterly unconvincing justification.

Speaking to Newsclick, Professor Subhendu Ghosh, Head of the Department, Biophysics, Delhi University, said, “Any experiment on gene manipulation, whether it is plant or microbe or animal, has to be done with caution because of the possible hazards in the biosphere. The experiences of GM plants and bacteria/viruses have not been very pleasant all over the world. I feel, gene editing in the human embryo is most dangerous as there is no control of its consequences. If this practice is made check-free, one can logically create a demon, a superman and what not. Is it desirable or ethically acceptable by the human community? Do we have remedies for the destruction of the human race caused by this technology? It could be much more harmful than nuclear weapons.”

Satyajit Rath of National Institute of Immunology, Delhi, also expressed his apprehensions about the experiment. “The way the gene editing experiments on human subjects have been done in China appears quite unethical in a variety of ways. First, anything done in such secrecy and then publicised rather than formally submitted for academic peer review with all details is suspect. This is an example of how such work will and can get done for material gains. Second, the consent process seems to have been very poor, underlining the vulnerability of poor and/or under-educated people, parents in this case, to such exploitation. Third, the experiment did not actually meet any real 'need', making it a gratuitous experiment, and thus ethically inappropriate. It is possible to imagine such experiments being done eventually with stringent ethical and technical safeguards for a life-or-death need, but this is far from that. Fourth, it is unclear if the actual experiment, one the one hand, was really done, given the lack of details.”

Rath said on the other hand, that such details were are actually available seem to suggest that the experiment was technically badly done, causing even more uncertainty, again ethically inappropriate. “This technical mess is likely to be in part an inadequate actual mutation of the intended target gene, and in part to do with as unintended changes” he told Newsclick.

“Gene editing itself is experimental and is still associated with off-target mutations, capable of causing genetic problems early and later in life, including the development of cancer,” Julian Savulescu, an ethicist at the University of Oxford in the United Kingdom, said in a statement. “This experiment exposes healthy normal children to risks of gene editing for no real necessary benefit,” he says. 

The University of Edinburgh Bioethicist Sarah Chan in his statement to Science magazine worried that the premature use of gene editing prior to consideration of social aspects of the work “threatens to jeopardize the relationship between science and society … and might potentially set the global development of valuable therapies back by years.”

Ethical Issues Regarding Genome Editing

Most of the ethical discussions about genome editing on human subjects is centered on human germ line editing. This old debate got a new impetus following the discovery of CRISPR; which is a potential technique of greater accuracy and even easier in comparison to the older techniques.

Launched in 2015 in Washington DC, US, the International Summit on Human Gene Editing is an international effort to regulate the application of genome editing technologies led by the US, the UK and China. As of 2014, there were 40 countries that have banned or discouraged research on human germ line editing.

Safety Aspect

The utmost concern regarding genome editing is that of safety. The possibility of off-target effects – editing got in wrong places and mosaicism—where some cells carry the edit while others don’t, is very much high in the gene editing experiments. The risks involved cannot be justified by mere mentioning of potential benefits of the process.

Many researchers even believe that the genome editing in embryos will never be able to offer any kinds of benefit than the existing technologies like that of preimplantation genetic diagnosis (PGD) and the in vitro fertilization (IVF).

Justice and Equity

From the point of view of justice and equity, there is also the concern that genome editing will be accessible to a small wealthy section and that in turn will only increase the existing disparities in health care and other inventions. In its extreme, germ line editing could create some classes of individuals bearing the signatures of their engineered genome.

Regular practice of germ line genome editing will, in time, pave the way for utilisation of the technique for other purposes apart from curing diseases. Who can deny the possibility that individuals of some special traits will be created by this technique? The special traits will again be decided by the developers and would reflect their interests.