Gene editing is a highly controversial topic. Several scientists think there are ethical and scientific ramifications that we do not understand fully.
Bengaluru: Monday saw a shocking announcement — gene-edited twin babies called Lulu and Nana were born in China a few weeks ago.
Over the next 24 hours, there was a tsunami of backlash — over ethics, code of conduct violations, and dappling in technology that humanity is not yet ready for.
The announcement was made on YouTube by The He Lab. The man in the video, He Jiankui, is a scientist at the Southern University of Science and Technology (SUSTech) in Shenzhen. Jiankui is now under investigation by multiple authorities, including SUSTech and the Shenzhen City Medical Ethics Expert Board.
Why was the surgery done?
The twins’ father, Mark, is HIV positive. Through IVF, the embryos of the twins were actually subject to “gene surgery” before implantation. The surgery was safely concluded — the mother was monitored through ultrasounds and blood tests.
After the birth, the twins’ genomes were again deep sequenced. Jiankui confirmed that the gene surgery was successful — the twin who was susceptible to HIV infection was edited to provide immunity. No other gene was touched, and the girls are “healthy and coddled” in their home.
Jiankui goes on to talk about the importance of gene surgery to prevent genetic and congenital diseases like cystic fibrosis.
“I believe families need this technology, and I am willing to take the criticism for it,” Jiankui said.
And criticism did come flowing.
The response
MIT Technology Review reported just a day earlier that Jiankui and his team in China are recruiting would-be parents for experimenting with genetically-altered babies. Specifically, the report states that medical documents published in Chinese show that the team hopes to eliminate the gene named CCR5, which is responsible for susceptibility to HIV, smallpox, and cholera.
SUSTech said in a statement that the institute was unaware of Jiankui’s research project, which had been conducted outside of campus. Jiankui had purportedly been on unpaid leave since February, and media reports about his experiments had come as a shock to the institute and the department of biology.
SUSTech further stated that his research seriously violated academic ethics and codes of conduct, and the incident would be investigated by a group of international experts.
Academies and scientists in the US and China have condemned Jiankui’s experiments.
Also read: Pioneer sees gene-editing therapy in your local clinic in five to 10 years
Designer babies
Gene editing is a highly controversial topic. Several scientists think there are ethical and scientific ramifications that we do not fully understand.
‘Designer babies’ are a big cause for concern, since scientists think the process could change the DNA of future humans in unknown ways, as we still do not fully understand how genes interact with each other.
The newborn Chinese twins, for example, will be able to pass on the resistance to HIV to their offspring, but no one is sure what else they would be passing on.
The concern has been voiced by several scientists online as well.
a @YouTube video by the researcher w/ "the gene surgery was safe and "no other gene was changed" [without any data] https://t.co/lf6nStrqxD via @Aiims1742
A bit disproportionate, in light of potential historic significance 2/2
— Eric Topol (@EricTopol) November 26, 2018
The risk is that today, in 2018, with so much still unknown, we start to decide which gene variants are allowed to persist in the human gene pool. A thousand years from now this will look insane, an unprecedented and unnecessary culling of human genetic diversity. 11/11
— Mukund Thattai (@thattai) November 26, 2018
Furthermore, it turns out that scientists working in the field simply do not know who Jiankui is. He doesn’t have a history of publishing papers in the field, and his scientific background lacks the expertise to perform such experiments, which he seems to have done privately.
CRISPR/Cas9 and the technology
The technology that makes gene editing possible is CRISPR, which won the Nobel Prize for Biology in 2018.
CRISPR is one of the biggest scientific discoveries of our times, and is set to play a very prominent role in everything, from agriculture and human reproduction to disease control over the next few decades.
In simple terms, Clustered Regularly Interspaced Short Palindromic Repeats/CRISPR associated protein 9 or CRISPR/Cas9 — shorted to just CRISPR — is a form of immunity originally observed naturally in bacteria. When infected by a virus, the bacteria take a copy of infecting virus DNA and store it, much like a database. When a virus in the database makes an appearance again, the Cas9 enzyme kicks into action, cutting up the DNA of the virus.
This cutting up of DNA strands is what is utilised in gene editing. When the Cas9 identifies and cuts a strand, the DNA repairs itself. But this process can be intercepted and a new strand of DNA can be placed where cuts have been made, thus altering the DNA. This technology is extremely easy to implement and replicate. It is also extremely affordable, with DIY kits available online to edit genomes.
This is precisely what Jiankui’s lab did. The CCR5 gene produces a protein that HIV viruses stick to. By mutating the gene, the virus has no place to infect.
The question of ethics
Creating genetically-edited babies is illegal in most countries (not legal yet in India, although guidelines exist prohibiting it). China itself has restrictions on editing, although much like India, it has no laws against it.
The United Nations called for a moratorium in 2015, which is voluntarily implemented and adhered to internationally.
The concern mainly stems from the grey area between therapy and enhancement. HIV is a disease that requires therapy, but would blindness be considered a disease? Or deafness? In a world of “perfect” human beings, would being overweight be considered a disease? Or being born shorter then average? The UN bluntly stated that gene editing for enhancement would eventually encourage eugenics by lowering human dignity.
Jiankui brought up ethics in his own video as well. He said: “The media hyped up Louise Brown’s birth as the first IVF baby. But for 40 years, regulations and morals have developed together with IVF, ensuring only therapeutic applications to help more than 8 million children.”
This is, however, a false equivalence. The only thing IVF does is to enable the formation of an embryo outside before being replanted into the womb. It effectively simulates a natural conception: The children born are no different to naturally-conceived ones.
But this isn’t just a matter of ethics.
Also read: Gene-Edited Babies Shock the World, But Not Investors
Supremely powerful tool
The problem here really isn’t stopping scientific growth. CRISPR as a tool is supremely powerful — it can ensure that babies can be born immune to HIV, so no doubt resources should be directed towards it. But such things cannot be done blindly.
Traits like eye colours are simple to edit, but others like height and IQ are more complex, with hundreds of parts of the human genome interacting with each other to provide an outcome. In cutting out the HIV part of the babies’ genomes, the researchers have effectively entered uncharted territory, with nearly zero knowledge of what other aspects of the babies will be edited as a consequence.
Feng Zhang, one of the inventors of CRISPR, has called for a moratorium on gene editing, saying: “Given the current state of the technology, I am in favour of a moratorium on implantation of edited embryos.”