• Recently, a Chinese scientist triggered alarm and confusion across the scientific community with the claim that he had edited the DNA of human embryos to create twin baby girls.
• He also said – the twin baby girls had been born “crying into the world as healthy as any other babies”.
• The controversial experiment, publicized through the media and videos posted online by He Jiankui of Southern University of Science and Technology of China, was criticized by many scientists worldwide as premature and called “rogue human experimentation.”

He Jiankui’s controversial claims

• He claimed that his experiments produced the first genetically altered babies using gene editing technology.
• The scientist claims to have used CRISPR/Cas9 technology to alter the DNA (deoxyribonucleic acid) of embryos before implanting them into the mother’s womb to make the twin babies resistant to HIV.
• The unverified claim by He has stoked public fears and renewed apprehensions that babies might one day be “designed”.
• It raises an urgent need for sound governance and greater public dialogue on gene editing.

(For basics on Gene Editing, refer the link – Editing our genes)

Potential of gene editing

Gene editing has got incredible potential. These technologies hold the promise of curing any human genetic disease.

• Switzerland-based CRISPR Therapeutics and Switzerland-based CRISPR Therapeutics, with labs in Massachusetts, and Boston-based Vertex Pharmaceuticals have recently launched human trials of an experimental CRISPR-Cas9 therapy for b-thalassemia, a blood disorder that decreases the production of haemoglobin, an iron-containing protein in red blood cells that carries oxygen.
• An oncologist at China’s Sichuan University was the first to edit human cells to treat lung cancer in 2016.
• China is also attempting to halt disease progression in patients with oesophageal cancer by manipulating a piece of DNA in white blood cells.

Possible pitfalls of gene editing

The unverified claim by He came on the eve of an international summit dedicated to discussing the emerging science and ethics around powerful tools that give scientists unprecedented potential to tweak traits and eliminate genetic diseases — but that have raised fears of “designer babies.” By editing the DNA of human embryos, scientists change not just the genes in a single person, but also their potential offspring — in effect, altering the human species.

While it is illegal to deliberately alter the genes of human embryos in India, in the US, and many other countries, the legal position on gene editing in China is less clear.

The broader scientific community condemned the lack of transparency in the development, review, and conduct of clinical procedures for He’s experiment.

Do you know?

Difference between genome editing (GE) and genetic modification (GM)

• Many are not aware of how genome editing (GE) is different from the genetic modification (GM)
• While GM involves permanent integration of a foreign gene into the host genome, GE only involves manipulating the endogenous gene without inserting a foreign DNA.

Conclusion

Two notable failings of He Jiankui’s experiment were the inability to obtain consent from the participants of the trial, and the highly questionable ethical standards implemented to protect the welfare and rights of the research subjects.

Gene editing experiments may prove to be a blessing for parents carrying disease-causing mutations to have their own children, yet these interventions raise crucial safety and efficiency concerns leading to what scientists and doctors call off-target mutations and mosaicism.

Since the results of He’s experiment have not been published or peer reviewed, some experts fear that his effort might not have been screened for off-target effects and mosaicism, therefore putting the twins’ health at risk.

Crucial questions need to be asked with regards to fragmented legal frameworks, unclear regulatory practices, ambiguous policy advances and voluntary measures governing gene-editing technologies at national and international levels. Considering the rapid pace of genome editing, the existing overarching governance frameworks in India and elsewhere need urgent examination and development.