Some potential ethical problems with the results of genetic research

About 50 years ago two medical scientists discovered that DNA – the stuff of life – is arranged in a double helix in our chromosomes. Two strands winding around each other.

There were actually three people who did the work.

But the third person, the woman involved – a crystallographer named Rosalind Franklin – did not share the glory. Yes, she was acknowledged before she died, but she never shared the Nobel Prize with the two men, Watson and Crick. To be fair, she did not realise the significance of her crystallography while the two men did. She got it wrong. They got it right. But still, those interested in fair play and a fair go might like to examine that bit of history. Prizes like the Nobel are sometimes as much about personalities, power and politics as they are about the underlying science.

But back to the double helix.

It is so famous and has opened so many fruitful avenues of work. Each strand of the helix is made up of multitudes of genes and each gene is made up of just four special substances called nucleic acids in combination with some other rather ordinary chemicals. If you change the order of these four acids and combine them in a different order you get a very large number – billions – of variations and it is these different combinations that make up our different genes.

Some biological scientists determined to nut out all the sequences – that is the order of nucleic acids in every gene. Tools developed and sped up the processes a lot – more are appearing each year. Some other scientists saw that what their colleagues were proposing would take too long for them and so they talked the US Government into funding what became known as the Human Genome Project. This was a 15-year funded program designed to determine the sequences of every human gene by the end of this decade. Progress has actually been quicker than expected and complete understanding is expected by mid-decade. There are web sites now where scientists put out their latest sequences – they just cannot wait for journals.

Scientists will understand, better than they have ever done, diseases that come from a single gene; will understand, better than they have ever done, diseases that come from multiple genes; and will have capacities to alter the genetic make-up of people to remove troublesome genes. There will be side consequences too – the current concern about forensic applications of genetic knowledge is just one example.

From the beginning, 3-5% of the money was held out for ELSI – Ethical Legal, Social, Implications of the Human Genome Project.

You might care to consider a whole lot of questions. Each question will face the society and its people imminently. So you are probably only about 10 years ahead of society.

(1) Will we only be allowed to be born if our genome is acceptable?

(2) If so, who will make that decision?

So, a couple may be asked or required to have the genome cleared first.