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Designer babies: Where should India draw the line on gene editing?

Designer babies: Where should India draw the line on gene editing? (JGI/Getty Images)Designer babies: Where should India draw the line on gene editing? (JGI/Getty Images)
We need a national conversation before we think about changing the genetic material of our children, writes oncologist and author of `The Gene’, Siddhartha Mukherjee.

A few years ago, scientists developed powerful technologies to “edit” the genomes of human cells. There are two words in that sentence that deserve explanation -and that matter greatly for India. The ” genome ” is the entire repository of genetic material that is needed to build, repair and maintain humans. It contains about 3 billion letters of DNA -A,C,T and G -strung together in a rather inscrutable sequence (ACTGGGTTT… and so forth). It might be likened to an encyclopedia of our genetic material -all the genes in all our cells, the additional sequences of DNA that tell our bodies when and where to deploy these genes, and stretches that have no known function. Indeed, if it was printed as an encyclopedia, it would encompass 66 full sets of the Encyclopedia Britannica.
Until recently, “editing” the human genome (or any genome, for that matter) was thought to be impossible -that is, scientists generally agreed that it would be difficult, if not impossible, to change the code written into the encyclopedia in an intentional manner. All of this changed in 2012, when a team of biologists discovered a trick by which the human genome can be altered in a rather simple manner. To return to our analogy , this would be like picking one book from the massive library of encyclopedias, changing a single word in that book, and leaving the rest of the code untouched. We still don’t know the safety or fidelity of this method -perhaps other words in the code are unintentionally changed -but it is a more powerful method of intervening on the genome than we have encountered in the history of science.This technique has been called ” gene editing “.

What does this mean, and why is it important?
On one hand, the capacity to change the human genome in an intentional manner opens up powerful new therapeutic capabilities. Medical scientists can imagine using this technology for gene therapy in human lungs or blood cells -correcting the genetic abnormality that causes sickle cell anaemia, for instance, or other devastating human diseases.But is there also the possibility that these tools will be used to enhance height, or intelligence? What if scientists used these technologies to change the genetic material of human embryos -thereby permanently changing the human gene pool?
These questions were raging urgently throughout the scientific world when a disruptive experiment was published. In the spring of 2015, a laboratory in China announced that it had attempted to “edit” the genomes of human embryos. At the Sun Yat-Sen University in Guangzhou, a team led by Junjiu Huang obtained 86 human embryos from an IVF clinic and tried to use “gene editing” to correct a gene responsible for a common blood disorder (only embryos that were non-viable in the long term were chosen). Seventy-one embryos survived. Of the 54 embryos tested, only four were found to have the corrected gene inserted.

Rage and anguish broke out through the scientific world in response to the experiment in China. In the US, genetic intervention on a human embryo is barricaded through strict laws -and this arena is especially scrutinized as biologists continue to explore gene-editing technologies.

Chinese commentators, however, were more genuine about the use of such technologies. When the prospect of an international moratorium on gene editing in human embryos was suggested, one scientist wrote: “I don’t think China wants to take a Mora to rium.” A Chinese bio ethicist clarified, “Confucian thinking says someone becomes a person after they are born. That is different from the US and other countries with a Christian influence, where because of religion they may feel research on embryos is not okay”.

Where might India fit in this bioethical spectrum? At least this much is clear: a response is necessary, because the tools to modify human embryos are becoming simpler, more accurate, and widely available around the world. With burgeoning biotechnological capabilities, scientists in India could potentially perform experiments similar to the ones performed in China, or other experiments that might lead to gene editing in human embryos. In 2001, as described in the British Medical Journal, a national bio ethics panel in India “said that scientists may harvest human embryos for re search before day 14 of gestation with the in formed consent of the donor. All projects would have to be approved by the national bio ethics p a n e l , a n d re searchers would have to share any commercial benefits that emerge from embryonic stem cell lines with the donor.”

The Indian Council for Medical Research, and other bio ethics panels in the country are performing an admirable task of re-evaluating these guidelines in the light of new gene editing technologies. But this needs to be a national and public conversation. What moral precepts should guide us as we think about changing the genetic material of our children? Where does our culture, or history, force us to draw strong lines? The context is especially important, because the desire for genetic intervention exists in this country . In parts of India, crude technologies of genetic diagnosis through amniocentesis (and other methods) have reportedly resulted in the selective abortion of female fetus. The impact of genetic diagnosis remains unclear, but the overall skew in the gender ratio in parts of India is striking: about 850 females to every 1,000 males in Punjab and Haryana. The shift towards male children in these states may underscore a more general aspiration to use interventions -genetic or otherwise -to produce more “desirable” children.

Should the bioethics panels require the consensus of such citizens in drafting a policy on genetic intervention on human embryos?

These questions will only be amplified in intensity as we move towards the future. For now, as we consider the wider implications of gene editing in India, it might be advisable to use three guiding principles for the future.

First, genetic interventions should only be used to alleviate extraordinary suffering -that is, their role should be restricted to diseases that devastate human beings.

Second: these interventions should be used on genes that are clearly implicated in diseases, and not genes where the link to the illness is weak or speculative (and certainly not used to tamper with genes that purportedly influence height or intelligence, about which we know very little).

And third, and most important: the interventions should not be carried out without state mandate or state supervision.

These principles might be imagined as a “safe triangle” within which genetic interventions on humans may still be performed -while the Indian public considers future policies in this arena. Until a time that a consensus is reached, Indian scientists might also wish to join the proposed international moratorium on gene editing on human embryos.

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