Gene-testing questions.

By A.C.

I have a personal interest in my genetic code. My daughter died from breast cancer, and I wanted to know why. So I carefully worked back through the family history records, and began to realise that the problem maybe did not lie with my wife or her ancestors but with my father’s.

This was confirmed by a gene test at the local Genetic s Unit in Aberdeen. I was given lengthy counselling as to what a positive result could mean with regard to insurance and life expectancy, and statistical possibilities of being susceptible to other forms of cancer.

Shortly after my daughter died, I developed bowel cancer. One is never “cured” of cancer, the disease is in remission, hopefully permanently.

My other daughter will not take the actual test. After a lot of counselling, she goes for a monitoring scan every year.

So when I read that Jeremy Hunt, the Health Secretary at Westminster wants the UK to become the first country in the world to sequence people’s genome and form part of their health records, which will then routinely be used throughout their lives.

He plans to start this off by having every baby’s genome mapped at birth, and wants genome sequencing to become a routine part of medical records. It all seems positive and a good idea. What’s not to like in knowing everything about yourself?

“ Mr Hunt said: “We could be the first country in the world where everyone’s genome is sequenced at birth and we use it to give people the most profoundly detailed diagnosis of what they need to do to stay healthy. “We are at a moment that is potentially as significant for humanity as the founding of the internet. “Electronic health records, where you can understand people’s medical history over a number of years, can be combined with knowledge of their genetic make up”

I do not have a scientific background, and genetics, is a very complex subject which seems to have statistics, probability and possibility as the “odds” in the body we end up with – or as Mr Hunt predicts – the child who will be born. The UK Government is spending real money on this proposal -£100 Million.

I simply want to ask questions and can find no answers.

My first concern is over genetic variation that brings about disability in the foetus. We already have tests that show the probability of the children of parents that will be affected by particular genes. There is the first dilemma; would we risk having children if we knew that our genes might produce a genetically ill child? If a child is then conceived, what to do about it? Would there be a “gene therapy fix” available to sort out the genetic code should one decide to carry on with the pregnancy?

This testing and scanning for potential disease, could be a problem in itself. Although the Pharmaceutical Corporations and Bio–Physics Foundations would have work for thousands of people supplying the tests kits and scanners. We already know that of every 10,000 women screened for breast cancer, 47 are detected, but 127 are given needless treatment through ambiguous results or error.

Already we are seeing our NHS being fragmentised with privatisation slowly creeping in. Presumably, if one is scanning and searching for faulty genetic code, then surely the end purpose is to ‘fix it’. So will gene therapy be offered, or will the knowledge of what is possibly in store for the test subject be kept from them? Medical Ethicists are warning against that.

At the moment, it would seem that the social media that billions of people use daily provides a lot of marketing and personal data – a profile – that allows our movements online to be tracked, and very annoying adverts to be sent from central computer to our various online devices. That code in use on our computers allows, Security Agencies to also track and identify what we are reading or what illegal activity is being engaged in. So would a Government sell the information to Pharmaceutical Companies in the knowledge that this person might need xyz drugs, cholesterol lowering foods, or whatever throughout their life? The Pharma-corporations would be encouraged to develop more  therapies – especially for those who could afford it.

We already know that allegedly democratic countries are spying and watching our activities online, so what might happen when they have a full medical profile? Could a malign Government possibly use that data to weed out undesirable elements in society, or even worse by racially genotyping, could a bio weapon be developed that affects only certain humans with a particular racial marker.

Does all of this sound vaguely familiar? It is worrying that a century old idea postulated by scientists in the discredited idea of Eugenics, still burns in the minds of scientists, politicians and those who would seek to control nature. The road to hell is paved with good intentions, after all.

This proposal is not Science Fiction, and more awareness is needed.