What’s Your Genetic Identity Worth?
We’ve all seen it before, whether it’s on the TV screen, movie theatre or in real life, the new born baby enters the world and the mother gasps, “Is it healthy? Is it okay?”
The nurse makes sure that a breath is taken, counts fingers and toes and declares, “Yes, it’s a beautiful bouncing boy/girl/gender neutral term.”
What is conducted more stealthily though, is the pin prick test to the child’s foot. This tiny quantity of blood is whisked away to check for any genetic abnormalities that could prove problematic in the infant’s first stages of life.
In the United Kingdom, babies are checked for nine carefully selected conditions, such as the metabolic disorder Phenylketonuria, which can lead to brain damage unless the infant is given a low protein diet. As the genetic markers for more and more diseases become apparent, so too does the call for screening our children.
I can see a whole host of benefits from removing uncertainty from the question of whether an offspring has an inherent risk of developing a disease, but I can also see enormous conflicts of interest. Say, for example, that a person who knows that they are a carrier for Huntingdon’s Disease chooses never to have children. By ending the family heartache of raising loved ones who will go on to develop such a debilitating disease, they are contributing to the decline in the number of carriers within the population at large.
But what if screening is used for more draconian measures, such as legislating mandatory testing before the child is even born? How long will it be before every foetus is subjected to a full DNA profile test before the legal cut off date for terminations is reached? Will we have legislation overriding parental consent on aborting those who fail to reach certain health standards?
Worse still, will we have a choice over whether our genes are worthy of passing onto another generation? The ethics of these scientific advances are staggering, and few politicians appear to make addressing them a priority.
It’s not as though we haven’t been given a glimpse of how this could translate into real societal change. Writer-director, Andrew Niccol, explored this very theme in his 1997 film, Gattaca. In this blockbuster movie, a genetically inferior man assumes the identity of another person to achieve his ambitions of space travel.
In their advanced society, identity cards are replaced by DNA blood tests, whether it is to access a building, pay for a cab ride or apply for a job. Those who are conceived the natural way are shunned and ostracised as inferior beings. The first stages of parenthood in this scenario begins with a discussion over desired physical characteristics with a designer.
The science fiction nature of this film was daring and at the time, exhilarating. To me, these concepts were so far in the future that it didn’t even warrant concern. Now, twenty-three years later, the future is here and it’s frightening.
In November 2019, the former UK Minister for Health, Matt Hancock, announced a pilot scheme of twenty-thousand babies who are to have their DNA fully sequenced immediately after birth. Our government plan to make this mandatory for every child born in Great Britain. This means that every human born in this country will be tracked, monitored and checked for criminal activities via a massive government database from that moment onward.
The assumption of guilty until proven innocent will be flipped on its head.
It naturally follows that police and intelligence agencies would be given hand-held DNA testers to stop and screen your blood to check for aggressive tendencies or whether you have left a hair follicle at a crime scene. You may think that if you have never committed a crime, you have nothing to fear, but experience tells me that every system is open to corruption. One misleading marker and your life would be over.
Some British scientists have spoken out against this action, citing biological and psychological reasons for avoiding the screening of infants. One example is that knowing you carry the genes for a debilitating or degenerative disease from birth could have drastic consequences for mental health. Francis Elmslie of the British Society for Genetic Medicine, suggests that DNA sequencing should be an option at the age of eighteen, not forced upon an individual. Dr Martin Brunet GP, from Surrey agrees, citing the cost implications alone.
It’s not the first time that British ministers have attempted to force us all onto a national register. The last time they tried to make all medical records available on a national database, medical practitioners kicked up such a fuss, that a compromise was reached allowing us to exploit a small loop-hole whereby we could opt-out by request. It was massively time-consuming, but enough people did so to make the database wholly incomplete and inaccurate.
Given that our government will happily sell our data to any company willing to pay, I am glad that I was one of those who took advantage of the loop-hole, or my life insurance premiums would sky rocket.
Those who believed the marketing hype surrounding paid DNA ancestry services, have already been genetically profiled, analysed, stored, and the information sold on to subsidiary companies. The added insult to that being that they paid a fee to lose their privacy.
While we are all distracted by the fiasco over Brexit, or ranting along with a teenager over climate change, we are blind to these stealth attacks on our personal freedom. It’s time to take a stand. Our genetic data belongs to us. Any attempts to collect, store, or monetise our data should be voluntary and conducted out of necessity, not to form another unequal society where the divisions are primarily based on the elite characteristics determined by our DNA.
If the UK government charge ahead without opposition, other countries will follow suit shortly after.
This genetic elitism could become a worldwide issue in just a few years. Will you stand up and fight against this attack on our rights, or let those in power tag us like cattle in a global information exchange?