The frightening potential of genetic editing goes well beyond rogue science

The BBC has featured an interesting story about the work of Chinese professor He Jiankui, who has produced the world’s first genetically edited people. Twins Lulu and Nana, born last year, were genetically edited as embryos with a mutation to the CCR5 gene which gives them resistance to HIV.

But a large study of nearly 410,000 people in the UK found that those with only a mutated CCR5 gene have a 20% higher risk of dying before 78. It goes on to point out that the risk of HIV infection transmitted from father to children is very small, and that in any case HIV is now treatable to the extent that most people can expect to live almost a normal life expectancy.

We must be fair here. He Jiankui’s actions have been roundly condemned by the scientific community, but it is a sobering reminder that the social good of any scientific advances depend equally on the potential uses of the technology and the moral parameters that surround its use. Put another way, a Pandora’s box, once opened, is opened to both the virtuous and the unscrupulous.

The first application of this technology in this manner, has taken a form that has outraged the scientific community. That should frighten us all.

The most immediate concern is that the intervention may have done more harm than good – that everything is a trade-off, and due consideration was not given to the merits of intervention and non-intervention.

Though this is a serious point that must be scrutinised thoroughly, I contend that the implications of genetic editing of human beings raises far more serious moral concerns.

Those who welcome the prospect of genetic editing with unabashed enthusiasm may belong to one of two groups of people.

First, those who believe that their suffering, or that of their loved ones, is so awful that it would have been better that they had never existed, or at least that it is beyond a shadow of doubt that an alternative life would have been a vastly more worthwhile one.

Second, those whose lives have not been touched by the consequences of genetic disease and disability. This latter group is far more numerous. No doubt the reasoning is entirely compassionate. Okay, perhaps trying to create designer babies would be an abuse of the technology, but eradicating disease and disability is surely a self-evidently noble pursuit?

To this question, I answer a resounding no! The mistake people often make is thinking of these conditions and disabilities as something that happens to a person.

Questions about my blindness can be asked in all kinds of ways, but a polite request to know what happened is not uncommon. The curious questioner wants to know the cause. It suffices for day to day interaction to explain the cause as faulty genes, with more detail given if desired. Yet I prefer to think of these faulty genes as an explanation, because that term denotes a reason without the same implications of an external phenomenon (something done unto me), or try to separate the blindness from me.

My blindness is not something that happened to me. I don’t see it as something given to me, whether I think of it in terms of the science of genes or theologically as God’s will for me. I see it as a part of me, written in to the very fabric of who I am, and that I and it are intrinsically linked. Without it, I would not be who I am.

It has had a hand in every aspect of my life, from my personality to the friends I have; from how I read to how I travel; from my humour to my profoundest fears. I think it almost certain that, were I sighted, I would be an unrecognisably different person.

For every door blindness closed off to me from the very start, it has probably opened 10 more. It’s the first glaringly obvious thing people notice that makes me different from the norm, and it’s often the aspect of my life that attracts the most interest. My entire way of making sense of the world has been formed with the absence of the visual elements taken for granted as a given. I have never wished that things had been, or could one day be, different.

More importantly, however, in the context of the future potential of genetic eradication of such an impairment, it brings to sharp focus how fine the line is between the eradication of conditions and the eradication of types of people – indeed in my circumstances I don’t see that line existing at all.

The horrifyingly stark reality can, I think, be seen clearly in a couple of sources, which I commend to you, dear reader.

First, the BBC documentary, ‘A World Without Down’s Syndrome.’ I share the horror of the documentary maker Sally, the mother of a young boy with the condition, as she sets out to understand the implications of less invasive screening and even contemplates the disappearance of Down’s people altogether.

The attitude of the great and the good of scientific research is brought home in one sickening clip (20 minutes in if you don’t watch in full) in which the future needs of her son and the prospect of his outliving her are brought up in what can only be described as a sanctimonious confidence that termination would have been the better option. This is what someone intimately involved in the introduction of screening really thinks.

The technology under discussion in this documentary is different to genetic editing, yet it is another road leading to the same destination – a greatly enhanced ability to control the types of life that should, and should not, be lived.

Next, I commend this old article to your reading, describing the technology involved in genetic editing. Whilst it should be read in full, one need look no further than its headline to find an attitude that is deeply concerning.

"Gene editing breakthrough allows precise fixes of humans."

You may argue that it’s a sensationalising, or simply insensitive headline, but when we already fail to see the fineness of the line between conditions and types of people, it’s easy to see how a fixing mentality can take hold.

If I were given god-like power to design one ideal human being, I can say with confidence that I would not deprive that child of any of its senses, or afflict it with a condition that is in any way life-limiting. I am less confident about a range of other questions: what socio-economic status should it have? Which part of the world should it reside in? What sort of parents should it have?

None of us are born as blank slates. Our genes are just one part of the writing that is already on the wall before we take our first breaths. The many factors that form our environment are the other part of that picture.

As we grow up, the quality of our lives is further determined for good or ill by the choices we make. The human being is not something that can be fixed. No demonstrably objective picture of the ideal life exists. Many people would agree that I, the blind baby born to wonderful and loving parents, have had a better life than an able-bodied person whose only reality even from childhood has been neglect and abuse.

Sally believes her Down’s-affected son, is a bundle of joy with a love of life, whose humanity should be considered above and beyond his condition. The researcher I mentioned earlier, used the fact that he would outlive his mother in a discussion about the benefits of a screening intervention she disingenuously denied would result in many more Down’s children simply being aborted.

With such contrasting perspectives on the value of that life, which of these individuals should determine the value of people with Down’s Syndrome? My answer is that it is simply a horrifying state of affairs that this question actually now matters, not as an ethical discussion but one whose answer has concrete implications in the real world.

You may well ask: aren’t scientists good people that will be guided by the kind of moral arguments you advance? In the main, yes. That there are incredible men and women making amazing discoveries for the good of humanity is beyond question. My fear is that we have unleashed a monster and we risk leaving scientists to make moral judgements that they are not equipped to make.

When I received my diagnosis, my parents were told by their genetics counsellor that I would never smile or eat ice cream. When supposed experts can be so wrong on trivial aspects of a child’s future life, we cannot have any confidence that, in much more profound and disturbing ways, they will not misjudge the potential of a future life.

That’s because medical knowledge doesn’t lead to an awareness of lived experience. Those who work in laboratories don’t understand what it’s like for clinicians dealing face to face with patients.

Not only do we need different strands of science to come together, but they also need to be supported by fields of philosophy, ethics and sociology, as well as by the many organisations within civil society itself. Far from criticising science, I believe we all have a responsibility not to force scientists to adjudicate alone on moral issues where they don’t have all the tools to do so.

I’ve been privileged to meet quite a few scientists over the years. Not one of them has ever failed to take seriously the human context within which scientific discoveries are made. Pushing new frontiers excites and motivates them, but I believe it increases their humility rather than fostering arrogance.

Just as science can’t be the sole arbiter, I don’t want to end this piece without being clear that I do not regard lived experience as king either. I offer my story because I think it’s the easiest way to encourage people to question their presumptions about disease and disability, and because I would be lying if I didn’t admit to wrestling intellectual considerations and raw emotion in how I approach this topic.

I do not claim that the inability to separate condition from person is a trump card argument. Would I feel differently about, say, editing genes that increase the risk of cancer or dementia? What about those who, unlike me, live with conditions that cause constant pain? I have known people with conditions that mean they will be lucky to live beyond their twenties. Isn’t that entirely different?

I do not deny that there are potentially good uses for genetic editing, or that some lives would undoubtedly be better if things were different. What I feel about my genetic hand in life isn’t a yardstick for everyone else.

However, I cannot come up with a guiding principle or satisfactory level of knowledge, to be able to answer the question of what should and shouldn’t be eradicated, and what experiences should be considered for confining to history. All I want to do is put my case for shifting our attitude to one of fear and caution, rather than confidence that we are dealing with a morally good phenomenon.

There are some ethical dilemmas for which the best answer is to accept that there isn’t an answer that goes beyond pragmatically muddling through on a case by case basis. Yet when we remember that ability and disability, wellness and illness, biology and social context can never be separated from the complete reality of being human and of human experience, our moral response will be much more sensitive.

When disciplines come together, and when different discourses compete as respected equals in the noble pursuit of truth, we will be more just in how we apply genetic editing and whatever the next genie is that comes out of the bottle and expands once more the horizon of the possible.
My simple wish is this: that we understand that, whilst He Jiankui has hit the headlines because his actions represent science gone rogue, the frightening potential of genetic editing goes well beyond rogue science.