‘Just because you can it doesn’t mean you should.’
I say this a lot, most often to Freddie and his sister when they demonstrate how they can lick the end of their own noses: a thing that both they and their father can do, but I and my eldest son cannot. I often wonder if this is just down to a difference in face shape, or if it is a genetic thing.
My knowledge of genetics is rudimentary to say the least — no surprise there, after all genetics isn’t something that a humble housewife really needs to know about, is it?
Actually, as the mother of a child with Down’s Syndrome, one who has chosen to stick her head above the parapet as a blogger and advocate, I find it very helpful to know a bit about the subject: not just to aid my own understanding of Down’s Syndrome, but to counter the nonsense I come across on social media, where people who know nothing about DS try to argue that those who have it are less than human, and therefore less deserving of resources, respect, dignity, compassion, and even life itself.
But, as I said, my knowledge is rudimentary. So it was with great interest that I sat down to watch the Royal Institution Christmas Lectures: Who Am I? in which Professor Alice Roberts, aided and abetted by Professor Aoife McLysaght, explored human evolution, our place on the tree of life, and the incredible diversity found in the human species.
I was particularly looking forward to the second and third lectures, and they didn’t disappoint. In the second one, What Makes Me Human I was reminded about DNA sequences: the unique code that distinguishes the DNA of one individual species from that of any other species on the planet.
So, you see, no matter how many chromosomes a person has (whether they have the typical 46, or, like my son, an atypical 47) every single strand of the genetic material contained within those chromosomes contains a DNA sequence that is uniquely, unequivocally, human. He is, therefore, as uniquely, unequivocally, human as everyone else and his humanity and personhood cannot be called into question.
Not that I was ever in any doubt about this, of course, not for one moment, but now that I have seen it properly and straightforwardly explained, I can articulate this fact into solid ammunition against the Twitter trolls who spout any and every argument to assert that people like my son should not be accorded the same right to life (resources, etc) as typically-developed people, as they are somehow not quite ‘human’. Believe me, I’ve come across some pernicious rubbish in this vein — Twitter can be a brutal place for parent advocates like me; the only reason I keep returning to this punishing sphere is because I am not willing to lie down and let the bullies and bigots have the last word.
The third lecture: What Makes Me, Me? explored the genetic reasons for the incredible diversity of the human species, and how our increasing knowledge of the role that genes play is enabling the development of new technologies that can ‘fix’ problems caused by faulty genes, or predict an individual’s susceptibility to certain diseases in order that preventative measures can be taken.
I don’t think anyone would argue against the use of the gene therapy technology that allowed a child, born with a faulty gene that left him defenceless against infection, to grow into a healthy young man with a functioning immune system. But …
and there is a but …
The technology that allows us to alter or replace one, problematic, gene also allows us to alter or replace other genes, even those responsible for human characteristics which are not problematic, but may be viewed as either more or less desirable for subjective reasons.
At this point in the lecture I heard a familiar phrase: ‘Just because we can it doesn’t mean we should.’
The first thought that popped into my head was of a recent news item: the claim made by Chinese scientists that they had ‘produced’ the first ‘genetically engineered’ baby — in this case genetically engineered to have increased resistance to the HIV virus. That’s great, right? Not neccessarily.
Genes are complex things, the way I understand it, they are seldom responsible for just one thing. Anything we do to alter any one gene may potentially have unanticipated knock-on effects. For every silver lining there is a cloud. I was reminded that there is a relationship between a naturally-occurring genetic adaptation that gives certain populations a greater resistance to malaria, and Sickle Cell Disease. I confess I’m not conversant with the science of this, but it suddenly seemed relevant.
The young people in the audience were asked to imagine that tests were available which could predict their likelihood of developing Alzheimer’s disease, Type 2 diabetes, and cancer: would they want to know?
The ratio of ‘yeses’ to ‘nos’ varied with each disease — clearly they had taken into account the fact that an increased risk of Type 2 diabetes can be mitigated by lifestyle changes, and onset of the disease can be treated by lifestyle and dietary means, and medication if neccessary. Likewise an increased risk of certain cancers can also be mitigated by lifestyle factors, or by other preventative measures, including pre-emptive surgery in some cases. But Alzheimer’s as yet can neither be prevented or treated. Not everybody would want to live their lives in the shadow of foreknowledge.
There is, as the Professor Roberts and her guest, Bioethicist Professor Heather Widdowes, pointed out, another aspect to be considered when contemplating genetic screening: confidentiality. While each person is genetically unique in that they have a unique mixture of genes, the genes they have are not exclusive to them, they are all inherited from their parents. So, if you have genetic information about yourself, you also have genetic information about other members of your family — who themselves may not wish to have that information, and may not want anyone else to have it either.
My ears really pricked up when they began to talk about the one instance in which we routinely offer one person a DNA test which looks not at their DNA, but at that of another individual — antenatal screening. The screening test for Down’s Syndrome has become such a routine part of antenatal care in the UK that many women simply accept it without question, and perhaps without considering the purpose or the full implications of the test: if the result is positive they are then faced with a very difficult decision for which they were not prepared. At this point we were introduced to Donna, a mum who had a positive antenatal screening result, and her daughter Frankie. Fortunately, Donna did not view the result of the test in a negative light, and used it to prepare herself for the arrival of a child with Down’s syndrome. In an ideal world, this would be the primary purpose of the test.
The lecture ended on a high, with a lovely musical celebration of human diversity. In an ideal world, we would all celebrate diversity.
But sadly we don’t live in an ideal world.
Too often, mums are pressured into accepting antenatal screening as necessary, even ‘required’ without being given either the information or the opportunity to consider the full implications of having this information. All too often mums who, like Donna, like me, had a positive screening result are steered, and sometimes pressured, towards termination regardless of our own, expressed wishes. It seems the medical profession have fallen into the habit of regarding prenatal screening as a ‘detect and destroy’ mission, rather than as an opportunity to allow women to make an informed choice, to prepare themselves for the birth of a child who is a little different if that is what they wish to do, and to offer these mums and babies some extra check-ups.
Even my older children’s Catholic High School, during ethical debates in RE lessons, encouraged the idea that termination of pregnancy for disability was a mercy and ‘prevented suffering.’ So few people are prepared to question the ethics of this view.
This is why I welcome this year’s Royal Institution Christmas lecture so much. This is why I applaud Professor Roberts, not just for the content of her lectures, but for addressing the ethical debates involved; for addressing the fact that we NEED to have this debate. I am particularly glad that it was considered a suitable topic for an audience of children and young people. I hope that Prof. Roberts and her colleagues have opened the minds of these youngsters to a different, more questioning, viewpoint.
In an ideal world, and more especially, in the very un-ideal world we live in, I would like to see these lectures shown in every high school in the country.
If you haven’t already seen this year’s Royal Institution Christmas Lectures on BBC 4, they are available on BBC iPlayer for another 25 days.