About the author : victoriafenton

Genetics are everywhere.  In my line of work we have a whole slew of ‘omics’ (really) – chief among which is “genomics” and then “nutrigenomics”.  There’s even an upcoming Online Health Summit on Interpreting Genetics run by the peerless team at the Evolution of Medicine.  I would encourage you to register if you’re at all interested in genetics – it should be fascinating to hear experts talk about how much we know, but mostly how much we really don’t yet know… which is a far greater proportion.
When the structure of DNA was identified in the 1950s, it was a commonly held belief that within the scientific analysis of the genetic blueprint of people would lie the answer to all of our characteristics, physiological traits and henceforth all illness would first have its ‘genetic source’ identified and then be subsequently solved.
The reality has been very different.  We have come to understand that beyond the genes, the environment, lifestyle, nutrition, social class, experiences and conditioning by others plays an enormous role in who we become as people and the illnesses we go on to acquire.  Whilst genes might show predisposition and/or tendencies, it is highly unlikely to correlate exactly with most illnesses of modern society.  Illness simply doesn’t always emerge due to genetics – there are so many other factors at play.
These numerous external factors (sometimes termed the ‘exposome’, or sum total of every other factor that influences an individual’s physiology) have the ability to regulate our genetic expression.
Expression is the golden word of genetic science – or at least it has been thus far.  For many chronic conditions there are malleable factors which can influence whether a specific gene or genetic mutation will be expressed – i.e. whether it will come to the fore and create issues.  Because environment has such a deterministic role within the way our genes become relevant, most of my industry has thus far been focussed on the manipulation of these external factors.  Nutrigenomics arose as a science for two reasons: firstly, our genes can indicate which foods we help us thrive.  Secondly, food – and more specifically the nutrients and vitamins within food – can play a direct role in regulating the expression of genes.
This is not going to be complex scientific blog, however.  I have touched previously on histones, and the acetylation and methylation at histones when replicating genetics which can bring about changes in expression etc. etc.
Instead, today it’s not the tweaking of the ‘exposome’ that I want to discuss.  Today I want to discuss last week’s headline news about something that happens long before the exposome affects genetics.  I want to talk about gene editing.
Crispr comes before nutrigenomics.  It comes before birth.  Crispr takes an embryo and splices some wonky genetics out of the very DNA at its primitive start to head off any mutations and illnesses before they even come into being.  It is, as far as science goes, quite frankly genius.  And they’ve just had their biggest ‘win’, reported everywhere last week.  A successful embryo DNA ‘editing’ which altered the DNA of viable human embryos (i.e. embryos that could, were it legal, go on to be implanted and become foetuses and then children).
Of course this is great for science.  But it also kicks up the debate again about whether DNA editing is a bit like playing God.  And when it comes to playing God there are fundamental questions that always arise: should we, who should, and to what end?

Genetic Debate, Designer Babies, Overpopulation

As someone with a host of genetic conditions (though none that would be ‘treatable’ under the Crispr banner) I do have a personal view on this specific scientific evolution.  But from both qualified and unqualified standpoints, so do many other people.  Let me briefly recap the views that I heard shared in national media last week:

  1. Gene editing is akin to designer babies, which in turn echoes the ethnic cleansing of the Nazis in Germany (a country in which, perhaps not surprisingly, gene editing is banned)
  2. Gene editing to eradicate genetic illnesses will result in a human population that will never get ill or even die
  3. Creating a race in which genetic illnesses are no longer present will result in people living longer and the planet literally running out of resources
  4. If the ‘good guys of science’ don’t patent and take advantage of this technology for its health benefits, the ‘bad guys of the world’ will take the technology and manipulate it for their malicious ends

Now I’m no genetics expert, but some of these arguments strike me as a) slightly unfounded, b) completely nonsensical and c) close-minded and not broad-focussed enough:

  1. Gene Editing is Designing Babies

Gene editing to eradicate known SNPs within the genetic code that will cause suffering, deformities, abnormalities, pain, disfigurement, complex (and expensive) lifelong health crises and enormous challenges and difficulties for all involved is nothing like attempting to selectively breed a population for blonde hair, blue eyes and athleticism.
The motivation to create an Aryan race is drastically different to the desire to eliminate the trauma, pain and burden of genetic conditions.  Perhaps I’m naive, but the desire to edit genes to eradicate dreadful diseases about which the patients have no control does not at all remind me of the selfishness of those who want (in their eyes) ‘perfect’ children.  Editing out disease is not like editing out a race due to prejudice.  There is an enormous difference between breeding for some subjective ‘perfection’ and trying to tweak biology in order to help people avoid a living version of hell – for both children born with genetic conditions and all those who care for them.

  1. Gene Editing causing populations that never die

Looking at the statistics of health crises in the modern world, most of them are chronic illnesses.  I have a job because of this fact.  I have a whole blog post in the works which asks, “Is Diet Enough?” which talks about the fact that it literally doesn’t matter how carefully or perfectly I personally choose to eat, I will never, ever heal my Ehlers Danlos Syndrome.  I may change how my body feels and rides the waves of symptoms – but I can never be free of it by simply ‘eating better’ or ‘living better’.  This is what genetic illness is – it is something that life can ameliorate the symptoms of but not heal entirely.
The fact is, however, that for the majority of my patients this is simply not the case.  For so many billions of the people on this planet their issues lie in their diet, lifestyle, environment, toxic loads, stress, manic jobs and woeful work-life balance.  Trust me, there are enough illnesses and poor lifestyle practices on this planet to mean that we’re not turning into an immune, immortal super race anytime soon.
My one concern about more people with better genetics but still appalling lifestyle practices is that the health systems are not set up at all to contend with lifetime chronic illnesses.  In prolonging the life of many millions by editing genes to guarantee survival we may actually be storing up a cash burden for later in life… but then that brings me onto the next point.

  1. We will run out of resources for all the people that survive

To anyone who says that more people, living longer, is going to bleed the planet dry of resources and the healthcare budget dry of finances – I say that you need to think more broadly.
Instead of lamenting the drain on the planet, we need innovation in this area which matches the level of innovation in health science which gives us the capacity to edit genes.
Instead of proselytising that the planet’s water will dry up, we would do well to focus on ways to work with the water supply we have.  I’m not bright enough to know how to do this – but I do know that perhaps in one of those children saved through Crispr there may just be someone genius enough to innovate environmental solutions which help us all.
And to those who lament that the health service cannot cope with the increasing elderly population it seems patently obiovus to me that this means the healthcare service needs radical reform.  It, in no way, signals to me that we should stop helping people be born.
Now I know I don’t have the lateral brain to revolutionise healthcare (for that, see the EvoMed guys) but I do think that there is an example here where the combination of two scientific advances could improve our ability to nourish the planet’s growing population.
This might sound idiotic – but one area Crispr might really come in handy is not in a specific, tragic, genetic illness – but in one genetically-linked illness which I deal with every day.  This area is gluten sensitivity.  Gluten sensitivity and coeliac disease both have well-tracked genetic links – and the genes are what predispose many individuals to gluten sensitivity or coeliac disease.  Many with coeliac and non-coeliac-gluten-sensitivity develop overall grain sensitivities…
And yet, grains are one of the most abundant, easily grown, easily harvested crops which are a staple that has the capacity to feed millions.  For so many people in my practice, grains simply cannot form part of their diet at all.  Sometimes this arises out of a gut situation and is lifestyle-related.  For many (myself included) this is actually genetically-determined.
A solution combining Crispr genetic editing to make grains tolerable to all would actually enable many billions of people to freely and at will consume the grain calories that are relatively easy to come by on the planet.  I know that life would be easier for many if grains were a useful food source.
And I know, this isn’t greatly scientific and might never, ever work… but I’m not afraid to make foolish statements about hypothetical science because it shows that I’m thinking outside the box.  What I would like to impress upon those who fear this over-population is that there is no point in holding one scientific vanguard back simply due to an inability to see the potential for innovation in another field.
I personally don’t like it when fear of a future we don’t know and cannot predict causes us to negatively view the present potential.  Currently this Crispr innovation looks like it shows outstanding promise for changing the discussion around illness on our planet.  Just because we cannot see where the planet can catch up doesn’t mean we can stop the tide of evolution as it happens.

  1. Which brings me to the ‘good guys using science’ vs. ‘bad guys abusing science’ conversation

Everything on this planet – from knives to nails to explosives to genetic engineering could be used to make the world better or worse.  A knife can cut food or kill a person.  A nail can build a home or form part of a bomb.  Explosives can level dangerous structures and excavate mines of resources, or they can blow up cities.  And so genetic engineering can create health – or it create a super race of mutant humans – an army, if you will, for those with nefarious intent.
On a scale of likelihoods, however, I’m pretty sure that nobody would know what to edit, genetically, if they want to create invincible super-hero humans.  I genuinely think we don’t know what to do.  Monogenetic disorders (illness which emerge from one gene within the genome) are relatively easy to identify.  Most illness – and most ‘character forming’ properties of genetics are polygenomic, involving many genes.  We simply don’t know what we’re doing enough to even begin to tackle this yet.
And a science in its infancy is ALWAYS labelled as potentially dangerous and societally revolutionary.  Today this conversation centres around both genetic editing and artificial intelligence.  A few decades ago this same conversation was had around the revolutionary concepts of the internet and mobile telephone technology.  Those technological inventions are indispensable today and have worked their way into the fabric of our lives – sometimes for the better, sometimes for worse – but once they were feared as potentially havoc-wreaking.
And yet there is one thing about humanity – we tend to adapt.  That’s what evolution literally means.  I am sure that some will seek to abuse any technology just as they have done with every other innovation the world over.  But experience shows us that the good outnumber the bad and, though sometimes it takes time, the rogue players are eventually reigned in or cut off by the masses.
Again, perhaps this is just my optimism talking, but I have never been a fan of letting the negativity of the few overpower the positivity of the many.  Those few exhort power simply by instilling fear.  Fear is not a great energy with which to make decisions about potentially life-changing tech (or anything for that matter).  We’ve proved with the last spate of global elections that we’re notoriously bad at predicting future outcomes so there is no reason to suspect that our fears over genetic technology will become anything like reality.

Genetic Destinies, Esoteric Life Questions vs. Scientific Reality

So you might understand that I don’t agree with the ‘fear-based’ reasons for not continuing to experiment with Crispr.  But why am I a fan of looking at this technology?  Is it because I want to edit my offspring’s DNA to avoid them getting sick?  No – and with my illnesses they really are polygenomic so you couldn’t do this anyway.
However, this debate does touch me deeply.  For those who don’t know I have two genetic diseases and several other comorbidities which occur as a result of them.

Though it’s not a decision I’m ever going to have to face, even if it were possible I do not know that I would trade my genetic illnesses.

That’s not because I’ve found a way to live through and with them – because doing that practically robbed me of over a decade of my life and has certainly presented me with enormous challenges that I would not have faced otherwise.  I can completely see why genetic conditions would do well to be eradicated.
However, for me, the challenges I faced because of my genetic conditions have been ones of personal growth and evolution.  I am the person I am today because I had to live through years of doubt and confusion about my own body and what on earth it was doing, would do and how it would feel.  I have been through the process of feeling deposed from my own body by mysterious physical symptoms and I have had to find a way back into being comfortable in my own skin, despite my biology teetering on the edge of breaking-point quite a lot of the time.

I wouldn’t have the personality and the attitude I have without having faced the trauma, pain and challenges of my own genetic crapshoot of illnesses.

Working out how to live inside my body has been my evolution as a person, my ‘journey’, if you will.  This is perhaps one of the strangest things about illness – genetic or not.  It changes you.  It makes you a different person.  For so long I was waiting to get ‘back’ to being the person I remembered prior to getting truly sick.  It took me years to work out that with illness there is no ‘getting back’, there is only going forwards.
And I’m one of those people who says that my struggles were the fires in which my strength was forged.  Do I believe it was my destiny?  Tough question to answer.  But I do know that eventually it became my opportunity, rather than my curse or my cross to bear.  And I know that I am not someone who chooses to become a victim of their illness.  That said, I am lucky and privileged to be able to make that choice – because there are many genetic illnesses which don’t provide that option.
I know I prefer being who I am now, after getting really unwell.  I know that my attitude, approach and manner is indicative of being someone who has faced some terrible life experiences, both physically and emotionally – all centred around my physical sickness.
And yet such growth and learning is not a given with more life-threatening genetic illnesses.  I have had the capacity to process, adapt and work around my ‘stuff’, all with the backdrop of my health crises.  Those with serious deformities and diseases as a result of genetic abnormalities aren’t always blessed with that luxury.
There is another factor which makes me personally hesitant to wish genetic editing upon everyone.  For anyone with a connective tissue disorder we are predisposed to sensitisation to the outside world.  Our structural integrity is compromised and so, by way of compensation, our bodies develop oversensitive alertness to potential threats.  Our nervous systems and immune systems are hardwired to keep us over-protected and hyper-aware.  Truthfully it is adapting to these secondary conditions and super-alert defence mechanisms that is the real journey of living with connective tissue issues.
Along with this sensitivity comes emotional, human sensitivities – compassion, empathy and the ability to help people because you can feel where they are coming from and meet them there to offer support.  Using this side of my ‘sensitivity’ is how I do my job.  It’s also why I do my job: so that people (like me) feel heard and understood in their pain and I can hopefully help them to navigate a way through to finding peace and comfort within their own skin, as I have in mine.  My genetic illness, therefore, is a double-edged sword.
Would I edit it out just because of the trauma my body has suffered?  If that would mean losing my emotional and person-centred sensitivity, would I change it?
I honestly don’t know.  But there is something that I do know.  It doesn’t require such extreme physical challenges for life to be difficult enough and for us, as humans, to face challenges.  Your character can be forged in the face of any crisis – and life is guaranteed to provide them, it doesn’t always have to be through physical diseases or illness.
Here is where I come back to the concept of evolutions, both personally and as a human race.
As I see it, our evolutionary development occurs when the basics are covered.  As soon as we are sure of food supplies, shelter and safety we have space in our brains and our lives to innovate.  As soon as the manual tasks are automated we gain freedom in our lives and our days to think – and from thinking is borne more innovation.  As soon as technology speeds stuff up we gain more free brain power and man hours to create bigger and better visions of future potential progressions.  And as soon as we can pay others to do the labour which takes the time we liberate ourselves to discovery – of the new, of the inventive and of the progressive.
Therefore, to me it seems like taking out the illnesses which cut us off and occupy basic resources in order to simply stay alive serves a simple role.  By not having to worry about physical safety we discover untapped potential to focus on bigger dreams, bigger goals and more pressing, global, planetary needs.  If solving genetic issues takes out the burden of dealing with genetically ill patients – and in so doing releases a wellspring of energy from which innovation can flow, then I’m all for it.
I heard something the other day which went like, “If you’re not thinking about terraforming then you’re not thinking big enough”. (For the uninitiated that’s the force of nature that is Tom Bilyeu challenging us to think about populating other planets… yes, literally… other planets…)
And I completely understand what he’s saying.

But we’d all have more time to contemplate how to terraform if we weren’t still so consumed with fighting more basic battles here on earth: the ‘stuff’ that keeps us struggling to keep some humans alive in the now.

Physical security, for the vast majority of this planet, is not yet anywhere near ‘secure’.  In the West we are doing better than most, but still millions die every year from genetic diseases which make their lives filled with pain and daily struggles.  They’re not able to think about terraforming or any other wonderful future-vision when the daily struggle is hard enough.  And if we could change reality so that nobody is born with a terrible illness we would have less need to tend the sick and more energy behind the progression of everyone.
If Crispr can change DNA it can liberate time, energy and human brain power resources to focus on the bigger problems and the hard tasks.  I may have been forged in the fire of my illnesses, but I’m damn sure that if there was a way to help people so that they are not born into lives of pain then I would be all in favour of that.  I don’t think human growth would stop.  I actually think that we as a race, and as a planet, could soar.
For that reason, I am a fan of experimenting with gene editing technology. I don’t fear that it is going to take away from the reality of being human. I simply think it will change the stresses of being human and provide us with the capacity to solve the really hard problems that face us in being alive today, because lord knows there’s enough of them…

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