By Kumar David –
Is it ethically repugnant to modify the gene-code of embryos? Storm over genetically modified twins
There is next to nothing I know about genetics but the Second International Human Genome Editing Summit for 2018 was held at the University of Hong Kong from 27 to 29 November and I took my chance to attend many sessions. The very technical ones were Greek to me but the broader interactions and sessions for the public were great. The conference is a big event (the first was in Washington DC in 2015) and the sponsors include the Royal Society, the US National Academy of Sciences and US National Academy of Medicine. The fun however was on the day before the Summit when scientist He Jiankui of the Southern University of Science and Technology in Shenzhen, just across the border from Hong Kong, described the work his team had done leading to the birth of genetically changed twins Nana and Lulu. He also claimed that another woman was pregnant with a similarly modified child. These are the first known genetically modified humans.
He Jiankui spoke to a packed hall of scientists and the world’s press and as you can guess all hell broke loose. Here are some reactions. Nobel laureate David Baltimore, a Cal-Tech prof emeritus, called it irresponsible: “I think there has been a failure of self-regulation by the scientific community”. David Liu of the Broad Institute, Massachusetts, challenged He Jiankui on how the girls benefited by having their DNA altered. The children were not at risk of contracting HIV at birth he said and there were many other ways to avoid HIV infection later in life. “What was the unmet medical need for these patients?” Liu asked. Matthew Porteus a professor at Stanford declared “He’s already at risk of becoming a pariah. Scientists discuss research plans with colleagues to get feedback years before they set out. Unless he starts to engage in the scientific process it will get worse and worse.”
He Jiankui described how he used a well-known editing process called Crispr-Cas9 to modify a gene called CCR5 in embryos created through IVF for couples with HIV-positive fathers. The modification mirrored a natural mutation found in a small percentage of people which makes them resistant to the virus. He faced a stormy hour-long session and defended himself commendably against angry scientists and the media. He concluded: “I believe that not only in this case but millions of children need this protection since an HIV vaccine is not available. For this I feel proud.”
The crux of the debate is what you might call the fear of a Frankenstein-Creature and to make it worse the genetic change may be heritable, meaning a continuing line of descendants may inherit and carry forward the change. Mary Shelly (1797-1851), wife of English poet Percy Bysshe Shell wrote the tale of a young scientist Victor Frankenstein who created a Creature in his lab. The Creature, hideous to behold, escaped and wrecked much havoc but when Victor tracked it down it pleaded with him to create a female Creature as a companion. Fearful that this could lead to a monster race that could savage mankind Victor refused. Hence the horror that greeted He Jiankui’s gene-edit was defused in this way in Mary Shelly’s famous novel.
Not everyone is negative about changing the DNA of a human embryo to give a child a better chance in life. The Nuffield Council on Bioethics said in July 2018 that it may be “morally permissible” if it was in the child’s interests and did not add to the kinds of inequalities that already divide society. “It is our view that genome editing is not morally unacceptable in itself,” said Karen Yeung, chair of the Nuffield working group and professor of law, ethics and informatics at the University of Birmingham. “There is no reason to rule it out in principle.” Experiments around the world have shown that DNA editing could, in principle, prevent children from inheriting serious diseases caused by faulty genes. Currently the law in most countries including China ban the creation of genetically modified babies. Chinese authorities, soon after his presentation, condemned He Jiankui’s initiatives and it is rumoured that his laboratory has been sealed.
The prospect of modifying genes in human embryos is controversial since, for a start, the procedure has yet to be proven safe. British researchers found that the most popular tool for editing, Crispr-Cas9 caused damage elsewhere in the DNA. If so, gene editing would disrupt healthy genes though it is meant only to fix faulty ones. Secondly, changes made to an embryo’s DNA would affect all its cells, including the sperm or eggs, thus genetic modifications would be passed down to future generations. DNA editing also raises the possibility of “designer babies”, where the genetic code is knowingly rewritten so that the child has superior traits. The Nuffield report does not rule out any specific uses of genome editing, but says that to be ethical, it must be in the child’s interests and have no ill-effects for society.
George Church, a geneticist at Harvard agreed with the report’s guiding principle that gene editing “should not increase disadvantage, discrimination, or division in society”. But reproductive gene editing, if permitted, will for sure be used for enhancement and for cosmetic purposes which may worsen inequality and social division. So I (KD) ask, will it be possible to stand in the way of a gilded age in which some are genetic ‘haves’ and the rest ‘have-nots’? It won’t be a matter of money since the price tag will plummet like microchips once the technique gets going. I think it’s an open question. We have two dilemmas to think about: (a) can the forward march of gene-technology (or any technology) be stopped, and (b) what is wrong in designing babies to be healthier and smarter?
Can technology be stopped?
Let me start with a bold assertion. There are probably tens of thousands if not more planets in the Milky Way galaxy carrying life forms and at a wild guess it is possible there are a few thousand carrying intelligent life. Multiply this across the universe and the number is daunting. There could well be millions if not billions of places in the universe inhabited by intelligent life. Some may be less and some more evolved than humans. It is reasonable to expect that some may comparatively be super-civilisations a million or many millions of years more evolved than homo sapiens. If such civilisations exist it is certain they would have upgraded their heritance mechanisms. True they may not be carbon-based and may have quite different ‘genetic codes’ (or whatever) than earthbound life forms, but this does not affect my basic hypothesis.
To ramble on, it stands to reason that these supra beings too worried themselves sick like we are doing now whether it is wise to mess around with inheritance mechanisms but found solutions to impediments. It seems to me that thinking long-term it is impossible to stop progress. I think once biotechnology finds ways to fix glitches and prevent undesired distortions, as technology surely will given time, the adoption of these methods will become standard.
The ethics of designer babies
What response can one give to parents who say “Why should I not design my baby to be healthier and smarter?” Pointing to the risks of something going wrong in the genetic engineering process and the baby being in some way misshapen is only a temporary obstacle. Gene splicing and reforming is in its infancy and like all technologies will improve with time. What answer can one give parents once the technology is perfected and the risk has been driven to near zero? Think of laser eye surgery or air travel which have now become everyday things. What about the objection that the changes will be heritable and persist for ever? The parents will reply “Yes of course, that’s the whole point. We want the improvements to persist for all future generations of our children’s children”.
What about the moral objection that one is playing god? The reply is that there are many things that god did not get right, so what’s wrong with fixing them? Take vaccination for example. God forgot to make the immune system resistant to polio and many other diseases so medical science stepped in and fixed it.
To finish on a general note. What if Chinese parents what to fix the genes of their children to give them and their descendants round instead of slit eyes? What if the English want to engineer their descendants to rid them of a grey-pink pasty hue and endow them with a gorgeous golden brown to put the bikini-clad nuggets on Copacabana Beach to shame? I say wonderful! And what if a future great leader decides to fix our native genes and make Lanka’s populace less stupid when it visits the polling booth? That would be a massive step forward. So, let me leave you with these iconoclastic thoughts to mull over as you sip your Sunday coffee.