The revelation that a Chinese researcher has edited the genes of twin baby girls in an effort to prevent them developing HIV shocked and stunned the world. Margo Somerville, Professor of Bioethics at the University of Notre Dame Australia discussed the ethical minefield this development opens.

“What this technology does is give us the opportunity to alter evolution permanently. The alterations are passed on to all the of descendants of that altered embryo. That’s a massive thing to do and it raises incredible ethical issues.” says Professor Somerville.

The Chinese researcher, He Jiankui, did not publish his research in any peer reviewed scientific journal and seems to have mainly presented his claims on You Tube. The news of the controversial experiment came during the second international summit on human genome editing in Hong Kong.

“Genetic scissors to chop bits out of genes”

Did it really happen?

At the summit Dr He gave a talk to explain what he had done but his answers were far from satisfactory reports Nature.

“Misguided … unnecessary … largely useless”

A surprising claim

Summing up the feeling of many attending the Hong Kong summit, the Nature article quotes Alta Charo, a bioethicist at the University of Wisconsin–Madison and a member of the summit’s organising committee. “Having listened to Dr. He, I can only conclude that this was misguided, premature, unnecessary and largely useless,” she says.

Posted to YouTube

The YouTube post provides this information about the claimed research. “Two Chinese girls, who we’ll call Lulu and Nana to protect their privacy, were born healthy a few weeks ago. Their mother Grace started her pregnancy by regular IVF with one difference: right after sending her husband’s sperm into her eggs, an embryologist also sent in CRISPR/Cas9 protein and instructions to perform a gene surgery intended to protect the girls from future HIV infection.”

The YouTube post continues ” The surgery reproduces a natural genetic variation shared by more than 100 million people of primarily European origin that confers strong resistance to initial HIV-1 infection and disease progression. While CRISPR/Cas9 has been studied in human cells and in early clinical trials, gene surgery in embryos intended for pregnancy has not previously been reported. Safety remains a key concern, particularly for unintended changes to the genome.”

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There are other, proven methods for HIV prevention.

What is CRISPR?

CRISPR, (also called CRISPR/Cas9) is a gene editing technique. The term CRISPER is an acronym for Clustered Regularly Interspaced Short Palindromic Repeats. When it is called ‘CRISPR/Cas9’ that is shorthand for CRISPR associated protein 9. All of that doesn’t mean much for non-scientists, but be assured CRISPER is the darling of gene scientists.

The scientific world loves CRISPER (and CRISPER/CS9 too I guess) because it makes it easier, cheaper and more efficient to edit or otherwise change DNA. This article on The Conversation, by Merlin Crossley, Deputy Vice-Chancellor Academic and Professor of Molecular Biology, UNSW takes a dive into CRISPER for newbies.

“The power to change the essence of life itself”

Chopping out genes

Professor Somerville explained that CRISPER is “Like a little pair of genetic scissors that can go in and chop bits out of genes.””However using CRISPER, scientists can’t always be precise about what they chop out.” she says.
“CRISPER is not the last of the little sets of scissors you can have” says Professor Somerville.

“They are rapidly developing other ones that they say are much more precise.”

You can make mistakes

“So they think they can fix that problem [accuracy] . But we also know that one gene can code for, for instance a thousand different proteins, and so if you alter that gene for one reason you possibly alter a whole lot of other things that you didn’t want to alter.” she says.

“Those are the physical problems and the risk problems with this technology.” says Professor Somerville.

Worried about human animal hybrids or putting human consciousness in a mouse.

Deep considerations

However, Professor Somerville believes even those issues and risks are dwarfed by the deeper ethical and philosophical issues that must be considered

“The way I put it to people is that we are the first humans ever who’ve held the power to change the essence of life itself, including human life, in the palm of our collective human hand.” she says.

A dumb ‘solution”?

Many scientists questioned not just the ethics of editing the human genome and the possibility of unintended consequences but the entire rationale of trying to prevent HIV infection using gene editing when there are there are other, proven methods for HIV prevention.

“We have to decide what we will not do”

So many questions….

The Atlantic published a very helpful roundup of the story called “The CRISPR Baby Scandal Gets Worse by the Day” The article says “The alleged creation of the world’s first gene-edited infants was full of technical errors and ethical blunders. Here are the 15 most damning details.”You’re welcome.

We have to decide, I think most importantly what we will not do with that, even though we could, do it I think one of the things we should not do is alter the human germ line.

The way that the Europeans put it and the way that most people agreed up until certainly the end of the 1990’s the year 2000 was that we hold the human germ line that is all the human genes that make up the human genome that we hold that on trust for future generations and we must not do what’s called “laying it waste’ that is altering it . We don’t own it and we have to hold it on trust.

“Ethics must be embedded in science from its inception”

The possibility tempted us

We all agreed on that when it wasn’t possible to alter it and what happened is with the advent of CRISPER technology in 2013, 2014, suddenly we were faced with the possibility. Suddenly a whole lot of scientists particularly said, we want to do this and we are only going to do good.” says Professor Somerville.

The things we need to think a lot more about are, Who decides what science will be done? Who funds it? Who wants to use it? What could it be used for? she says

” I think it was 2003, and we had a big international meeting in Budapest. It was the World Science Association and UNESCO and a whole lot of big world bodies for science.” Professor Somerville recalled.

“If you design children, you are treating them as a manufactured product.”

Ethics must must be embedded in science

“At that meeting the more traditional scientists argued that technology is value neutral. That you only have to worry about the ethics when people start to use it.”

“What we changed at that meeting, and we put out a declaration afterwards, was that ethics must be embedded in science from its inception. That means What do you do? Who does it? Where is it done?

Who funds it? All of that is part of the ethics. It’s a bit like freedom of speech, I mean you want freedom of science but we still have to ask perhaps ‘Are there still some things that we shouldn’t do?”

“I don’t know why I got into such a difficult area of work!”

Knock down drag out fight

On the question of scientists saying they will only use new technology for good Professor Somerville recounted a heated debate she had with two eminent scientists.

“Steven Pinker, who is a psychologist at Harvard and George Church who is a world leading geneticist and also at Harvard – they and I had a knock down drag out fight about exactly that.” says Professor Somerville.

They are arguing that we only want to do good and we will only use it to do good and I was arguing that we should never do that because I believe that it is inherently wrong to design a child and no matter how much you are saying I only want to do good to that child , you are still designing that child.

Jürgen Habermas, the German philosopher said that if you allow the designing of children, those children are not free, because they can’t make themselves someone else has determined what they’ll be and they’re not equal because a designed product is never equal to the designer. Also you are treating them as a manufactured product.

The genetic lottery is cruel

“Another German philosopher, put it this way; he said “Everybody’s got a right to their own unique ticket in the great genetic lottery of the passing on of life.”

“I follow that, but I must admit that even I have had a great deal of struggling with that. In the case of say, what if you could get rid of the Huntington’s gene?” Professor Somerville pondered.

“The Huntington’s gene gives you a terrible mental illness and you die in your 30’s or 40’s. What if you could get rid of that gene and you knew it wouldn’t do any other harm?  If you have it [the Huntington’s gene] there is a 50% risk of your children having it. It seems very tough on my part to say no you can’t do that.” she admits.

The scary possibilities

“What we are worried about is human animal hybrids or putting human consciousness in a mouse.” says Professor Somerville.

“The latest thing we are looking at is scientists making baby mice from two male mice or two female mice. We are looking at all sorts of variations made possible by this sort of technology.”

A difficult job

“I don’t know why I got into such a difficult area of work! I guess we never anticipated it.” says Professor Somerville

“I’ve been in it since 1975. This would have seemed like complete science fiction in 1975. Back then, we thought back than that once we sorted out organ transplants,which was mind boggling, we thought we wouldn’t have any more ethical problems. she says.

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