I recently learned that the DNA testing company Orig3n offers what they describe as a ‘fun DNA test’ claiming to be able to provide information on an individual’s strength, intelligence and speed. I love superhero movies, perhaps partly because they tap into my own wish to be able to achieve everything extremely well at lightening speed. Alas, even without a DNA test I already know from hard experience I cannot be super-anything. Even with gene modification, the chances of making me stronger, faster and more intelligent may be pretty slim.
On my drive home from Scotland after the Christmas break, I tuned in to BBC Radio 4 part way through a very realistic drama called Eight Point Nine Nine about gene doping in athletics. A little like some of the listeners to the first broadcast of War of the Worlds, who (allegedly) thought they were listening to non-fiction, I was at first shocked that such an irresponsible trial had been allowed, and surprised that I had missed the story in the news. To me as a geneticist, the scientific and the ethical scenario sounded convincing. I wouldn’t be surprised if at least some of what was described is happening – or at least being considered – in various parts of the world.
If I’m not an undiscovered superhero, and it’s not safe to try and get myself turned into one, then what is the current state of play in genetics? Keith Fox gave a very helpful talk on The Challenges of Recent Developments in Genetic Modification at the recent Christians in Science conference, which I will attempt to summarise here.
The availability of DNA tests for all sorts of things, from information about your ancestral heritage to disease risk, has proliferated fast in recent years. The level of misunderstanding about these tests is extremely high. For example, an MP claimed that the company that gave him an estimated 15% risk of developing prostate cancer by age 75 has saved his life, despite the fact that Cancer Research UK has estimated the risk of prostate cancer for men under 60 to be 18%.
One great misunderstanding is to think that each person’s DNA is a blueprint, giving an accurate picture of who they are – including behaviour, physical characteristics and future predictors of health. It’s often this view of genetics that drives forward false ideas about the potential of gene editing. But genes do not operate alone, but in networks. DNA is also part of an extremely complex system, including everything that happens to a person from well before conception. It is impossible to separate out a single gene and claim that it is solely responsible for a particular trait.
It is possible to identify diseases that are primarily caused by a single gene. The precise effect of the disease on an individual may vary a bit from individual to individual depending on their broader genetic makeup. And of course the possibility of having the disease at all depends on the development of that individual from sperm and egg and the subsequent growth and maintenance of their body, which involves the full suite of human genes – including all the factors that scientists do not yet understand.
Some of the single gene diseases may be treatable, to some extent, by gene editing. At the moment it is illegal in the UK to edit genes in embryos (unless they are destroyed by 14 days post-conception) but that may change – especially as a more accurate version of the latest gene editing technique was demonstrated just a few months ago. Would this be a great way to heal currently untreatable diseases? Some argue that gene editing would be justified if it helped the individual treated, and if it did not disadvantage others in society.
For others, gene editing would be a step too far. Is it ok to permanently change the genetic makeup of an individual without their consent, risking unintended consequences for them and their future family? For many, there are more viable alternatives for affected individuals to have a family than this potentially quite dangerous and expensive technology. In most cases it is far simpler, cheaper, and safer to select healthy IVF embryos [and I believe we should also add in the possibility of adoption here].
Another risk of gene editing is the superhero scenario. It would be very tempting to treat not just disease, but reduce the risk of developing disease later in life, adjust eyesight to match the top of the normal human range, boost intelligence, or give a few extra centimetres of height. If some enhancements did become possible, then why not edit the genes of athletes or military personnel to reach the peak of, or go beyond, normal human capabilities? Aside from the risks, and our inability to fully understand the genetic basis of most of these traits, gene editing technology throws up a range of very serious ethical questions. I don’t think any of these issues are completely new, but they are certainly new forms of some very serious problems.
If genetic enhancement were possible, would it make our societies even more divided between rich and poor than they already are? It may be difficult to regulate, because the latest gene enhancement techniques could leave no trace – the only effect on the genome being an altered (compared to the biological parents) but completely natural-looking gene? Would the unenhanced, or those with untreatable diseases, be left behind? And what would a teenager say to a parent who had chosen an enhancement for them that became undesirable later on?
Would enhancement actually achieve the desired results, or is the problem so often to do with the condition of the human heart? Could experiments in enhancement with the aim of equipping people to do incredible things perhaps result in terrible side-effects? For example, increasing IQ is not correlated with better moral values. [Peter James’s 2011 novel Perfect People explores this scenario.]
Tom Shakespeare, Professor of Disability Research at the London School of Hygiene and Tropical Medicine, has achondroplasia and has spent many years speaking on behalf of those with disabilities. He has said that “People with disabilities are, in my view, unlikely to be queuing up for genetic modification: their priority is to combat discrimination and prejudice.”
Keith observed that, “What seems like disease and weakness to some can include significant strengths and opportunities for others”, and “An over-blown enthusiasm for genome editing may avoid the question of how society includes people whose impairment will not simply be edited away”. For him, the most important ethical question is not “what should I do,” but “what sort of person should I be? How can I show love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self-control?”
I expect that the availability of relatively easy and reliable gene editing technology will affect many of us in different ways, both positive and negative, in years to come. I expect that dilemmas over the uses of gene editing maybe a permanent feature in society from now on. In these discussions, people of faith should not be shy in bringing what wisdom they have to the table.
Listen to the full recording of Keith’s talk.
Listen to Eight Point Nine Nine, a fascinating drama about gene doping in athletes (NOTE: only available on BBC Sounds for a limited period).