Abstract
Earlier this year, I was invited to debate the following statement: 'This house believes embryonic gene editing will improve the health of future generations’.
I was debating against the house along with my colleague Mik Scarlet. Both of us are living with the results of a genetic condition. I have acromesomelic dysplasia and Mik is a survivor of a genetic cancer, treated through experimental chemotherapy but resulting in him becoming a permanent wheelchair user. He was later involved in a car accident many years after the cancer treatment, which broke his already broken back, so was destined to be a wheelchair user one way or another.
We assert that gene editing will not improve the health of future generations. The study of gene editing is important. Its study and research shines a light on the human body and we stand to gain a lot from this knowledge. Additionally, if it is used simply to ‘disappear’ certain conditions and thus certain types of people, we must look at the ethics and impact of this more broadly and redefine what it means to be ‘healthy’ on a micro and macro level.
Many disabled people, whose bodies are often judged for their ‘viability’, ‘validity’ and ‘worth’ have seen the line between our disabled bodies and a definition of ‘health’ become blurred and intersect. We grow up being told our ‘sort’ of bodies are undesirable and inherently deficient objects to be pitied. Yet, our individual lived experiences are often counter to this view. Many of the barriers which prevent our achieving equality are politically, financially and socially controlled and not necessarily coded within our bodies. We are the lived experience of the spectrum between society’s prejudiced view of desirability and ill health.
Suppose for a moment that this conversation about gene editing isn’t about disabled people or even people living with a genetic condition but it is about a parent’s choice. In response to this, I say that every choice is impacted by financial conditions, prejudices and expectations. Many of these are socially dictated. Does the parent live in a society where people living with a genetic condition are seen in positions of power or represented as having normal lives in the media? Is it a society with appropriate social care and services to support families, so the ‘burden’ of disability and illness is minimised? These factors and questions still apply, even if the parent lives with the condition themselves. Thus, it is about the experiences of disabled people and whether we are included, excluded, represented and accepted by our community. Our lived experience, and the perception non-disabled people have of us, is having a very real impact on the decisions being made about people like us into the future.
On an individual level, those who worry their children might have certain conditions or traits, will feel relief. Knowing they can avoid those specific concerns and have a child without that condition. But by eradicating individuals with the condition, we are not beating the condition, we are not curing it, we are not even fundamentally ‘understanding it’ because if we did, we could treat it.
By eradicating individuals with certain conditions, we also lessen the likelihood of eradicating the condition itself because research on it is slowed or halted. The condition could come back at any time, springing up again elsewhere. Unless we entertain the idea of a large compulsory screening programme of every birth and person. We enter a never-ending game of whack-a-mole, forever erasing, should that condition ever recur.
And there are so many other infinite possibilities for fallibility. Removing one known possibility, doesn’t mean your healthy child isn’t taken out by a random accident, disease or other misfortune the following day. Anyone who has ever seen the film, ‘Final Destination’, knows there are many ways to go!
So, is gene editing an improvement in health? Or just a mere reshuffling of the deck cards?
I propose it is the latter with far-reaching complications that affect more than individual health. It has the potential to impact societal wellbeing and inequality.
Gene editing, if only available to certain groups will create greater economic and social inequality. Inequality is one of the greatest contributing factors to increasing populations of people with ill health. It will drive social inequality further as those who can’t afford it are left behind or discriminated against for having been born, when the opportunity was there for them to never have existed at all. Or will those people be left unsupported by a society that prefers to weed them out rather than allow them access and a share of its wealth and benefits?
Health should also mean to have mental wellbeing, to possess resilience, to be flexible and adaptive. That ‘health’ is the quality that lets you deal with and weather ill health. It is not healthy to merely brush undesirability away and ignore it because it is too hard to confront.
I argue that evolutionary survival and the health of a species is long game. Very long game. Cystic fibrosis and its possible link to cholera resistance is one example. What if the resistance to a different pandemic, lies in the deviation of genetic material we have been erasing? People who are considered less sexy than others, statistically have fewer sexual partners, therefore lessening the likelihood they will contract an STD. Who knew ugliness had an evolutionary perk?
We are part of an evolving system. A system that writes and re-writes itself to adapt in ways our tiny life spans, don’t yet comprehend.
I love that a human body, even one like my own with its own quirks, strives for functionality till the very end. The bones in my arms grew at different rates, yet they bend to meet one another for maximum function, in their own way. Even in the perceived bent and broken DNA off-cuts, there is gold. We just don’t recognise it because we haven’t evolved beyond seeing our bodies as a commodity. I hope one day, we do.
This period of exciting and experimental embryonic gene editing in human history is useful, it adds to our learning and understanding. In terms of the evolution of our species, our individual lives are so short, we won’t ever know its impact on future human development.
Nature has other plans for our health as a species over the long haul. Our genetic tinkering is limited by our imaginations and our own prejudices. Here is an example.
The Daily Mail – not an academic paper, I know, but one with a larger readership – listed one of the seven likeliest things to end humanity and therefore impact our health, as ‘The environmental damage being done to our planet by humanity’.
Regardless of whether you support the notion of climate change or not, as my father once said ‘you cannot take a dump in your living room and not expect it to affect the healthy atmosphere of the house’. Humans are having a devastating effect on our planet and its ability to sustain us. This being one of the greatest threats to human health in our time. Where is the suggestion we genetically edit future generations to be naturally vegetarian? An act which would drop our pollution output as a species immediately by 50%.
Or let’s downsize humans and make us all 3 feet tall. Make us more fuel efficient. Make us take up less space, so we can all live and fit in smaller apartments, on smaller pieces of land. Make us all more like … me … Suddenly I’m selling dwarfism!
So why aren’t you making more of me? Let’s improve human health and downsize!
The answer is simple.
What we imagine to be genetically desirable is not necessarily about health. And what is healthy is not completely objective.
Now, this is important. Although I say genetic desirability and health are not objective but rather they are subjective, there are some ‘normative’ measures. We must acknowledge those parts of the bell curve where more of the population exist. There are healthy heart rates, oxygen levels, blood pressure, etc. But as you move away from the core vitals and begin to measure things like ability, subjectivity begins to creep in, i.e. most people can walk but many of my wheelchair using friends living full and rich lives will tell you, ‘walking is overrated’. And some of the disabled people I know live with incredible amounts of pain I can’t even imagine and yet they deal with it. It impacts their lives but their suffering still isn’t what defines them.
Suffering depends so much on individual experience and strength. It is greatly increased by limited economic resources preventing treatment or by limited access to adaptive equipment, which could facilitate autonomy and improve individual ability. Suffering can be the result of social prejudice and social exclusion. It can also be a physical or psychological pain that doesn’t have any end until death. In any case, it is greatly affected by the environment in which it exists.
Medical model: Do I suffer because my dwarfism means I can’t reach the kettle in a standard kitchen. Or is it the Social Model: Do I suffer because I am denied an accessible modified kitchen, which I can reach?
Does a child suffer excruciating pain with a genetic terminal condition X because of their condition? Or is their pain made worse or unmanaged because society denies them appropriate palliative care and pain management options?
Again, this is a difficult discussion because no one ever wants anyone to suffer but even pain and suffering – to an extent – are impacted upon by social structures and the resources made available. The treatments that are made available and whether the patient’s emotional and psychological needs are being supported are all socially decided.
Then there is the concern for future generations that as variation is edited out, the minutiae of remaining difference begins to grow in magnitude. Such that the small differences begin to be perceived as greater ones.
Society’s ability to adapt and accommodate difference shrinks. People fear being different, not fitting in and their stress rises as their trust in the safety net of society diminished. Fearing that they will only be loved if they are not a burden. If they are only ever strong and show no potentially fragility and vulnerability. Because there is no room for that in the future.
A future so overflowing with health that it can’t accommodate anyone who isn’t also full of well-being. A community so healthy, it is inflexible and unbending. With its social systems and networks that only allow the super fit and well to access it benefits. A society that has become rigid, fickle and brittle. A community that has ossified. A place full of individuals struggling to always keep their bodies in check because the edge of acceptability has gotten too near. No space for deviation or variance. An entrenched status quo that fears difference and a community of people who have forgotten how to adapt and embrace diversity. That can’t be healthy for anyone.