Shambhavi NaikDec 14, 2018 16:40:59 IST
Chinese researcher He Jiankui – who announced on YouTube in November that he successfully modified the genes of Lulu and Nana, healthy newborn twins – has taken mankind one step closer to becoming the superpower that can triumph even nature in selecting our own genes. Scientists worldwide are appalled at Jiankui’s violation of a self-imposed moratorium by enabling the birth of genetically edited children.
But before we dread a future of designer children and super soldiers strutting around, we need to look at how germline gene editing – an inheritable change in the genetic code – may be particularly relevant for India with a high predisposition to genetic disorders and lack of affordable healthcare for the less-privileged. So, it makes sense for the country to invest in prophylactic technologies instead of therapeutic approaches.
Lulu and Nana are not the first children to harbour genetically modified cells. In 2015, one-year-old Layla Richards received genetically altered immune cells to remedy her leukaemia. She was subsequently declared cancer-free, with the hope of a healthy future. The remission of her cancer heralds the relief that gene editing could bring to victims of genetic diseases. The advent of CRISPR – Clustered Regularly Interspaced Short Palindromic Repeats – emboldened that relief, positioning it as the future of healthcare.
The difference between Lulu, who is likely insusceptible to HIV infection, and Layla, is that Layla cannot transfer her gene-edited cells to her offspring. Lulu, on the other hand, could pass on her HIV immunity to her child. Layla only has gene-edited immune cells while all cell types in Lulu’s body possibly carry the edited gene. The scientific risks are apparent – the universal gene deletion could result in unanticipated side effects. These secondary responses may manifest at any time, and so the study entails monitoring the children’s health till they are 18 and subsequently also, if they consent.
The study raises an ethical question: should we genetically manipulate our future generations without their consent? This is a debatable claim, since we have already been conducting activities that impinge on their lives without their consent. For example, industrial revolution occurred without much concern of its future impact. Only now with looming climate change can we fathom the grave future consequences. There is no denying that our activities have released mutagens that cause genetic diseases. Is it then ethical to deprive our future generations the very tools that can help them lead healthy lives? A cost-benefit analysis of individual gene-editing applications is a better evaluation of their advantage to society instead of a one-dimensional interrogation of its morality.
So should germline gene editing, or human germline engineering, be approved in India? And what would be the relevant concerns?
One question is whether the use of germline gene editing for enhancements such as intelligence or strength would result in an inequitable society. This scenario is very distant. We currently have very little understanding of how complex traits such as intelligence are genetically controlled. Also, many traits are regulated by multiple genes and editing them without side effects will be difficult.
Finally, most biological processes are not governed in an “on and off” manner. For example, skin tone is not black or white but, instead, a series of incremental shades. To achieve this gradation, biology deploys layered control on the genes, something that will be extremely difficult to achieve through mere gene editing. However, to fear that doomsday scenario to the extent of denying diseased individuals a healthy future is unreasonable.
Gene editing is obviously a powerful tool and can yield negative consequences if used incorrectly. Biohackers have misappropriated it to create DIY kits that are unscientific and could have serious health impacts. In a society besieged by strong stereotypes, gene editing could be used as a tool to select only desirable embryos such as males over females. However, India needs to set robust governance frameworks to deter such unwanted uses of gene editing. The United States’ Food and Drug Administration (FDA) has recently approved a trial of CRISPR in treating blindness in adults and as the world moves ahead with gene editing, India needs to join the bandwagon.
The question we need to address is what standards would such studies follow?
India needs to create relevant standards for regulating experiments in human cell lines, animal models, embryos and human clinical trials. Informed consent attuned to the local conditions and educational background of the participants would be obligatory.
If India chooses to take this bold step, or not, there is an urgent requirement for governance frameworks to regulate gene editing in the country. As observed with stem-cell therapies, the absence of a governance structure resulted in mushrooming of illegal and unscientific stem cell clinics. Given that the guidelines are not legally binding, it makes sense that we create minimum standards for researchers to abide instead of broadly banning areas of research. That wall may crumble soon.
For a long time, the Western world called for the ban on any embryonic gene editing. But now the US, Europe and Japan have allowed such modification to take place. The birth of these children is a sign that others may also open up to following this line of research. It is up to India to join the race and control its own healthcare solutions, or wait and depend on other countries to lend a genetically modified hand.
The author is a research fellow with Takshashila’s technology and policy programme
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