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.

(3) Will abortion of all other foetuses become the norm?

So, a couple whose foetus has "unacceptable" characteristics may be expected to be aborted.

(4) Will testing of all newborn babies for genetic predispositions to disease become expected?

(5) Will post-natal correction of genetic defects or predispositions become the norm?

(6) Will each of these processes be voluntary or compulsory or coercive?

Just suppose that one detects a combination of genes that makes it likely that one will develop diabetes in 40 years, is one obliged to have the baby "treated"? Consider the right of people to make choices and the right of society to define itself. Consider the coercive character of the phrase "voluntary disability".

Consider the value of human diversity and the dangers of selective breeding of super-human beings.

(7) Will reproduction be the same or will it become a laboratory matter?

The question here is whether sex will only be for pleasure or whether it will retain any reproductive function.

(8) If gene therapy is possible, what rules will be used to define those for whom it should be applied?

(9) Will gene therapy be expensive and available preferentially to the wealthy? Most other things are now.

(10) Alternatively, will gene therapy be included in some national system of underwriting?

(11) If it is so included, will subsidy be for all or only for some diseases?

These questions involve issues of equity and fairness as between people. Society has not answered similar questions well in the past – perhaps it will not get it right this time either.

(12) Who will "own" personal information derived from studying genomes?

(13) Will commercial interests, or society, apply coercion of any kind on the basis of genetic differences between people?

Consider an insurance company that uses risk assessment to "load" basic premiums. So if you are a smoker, you pay more. Should it happen, will it happen, that the possession of certain combinations of genes will result in higher premiums too?

There are 13 questions and they go to what we are, what our society is, and what that society and we will be.

A question you may wish to consider in depth is what the genome may mean for human longevity. For decades there has been an unspoken search for immortality, picked up in the so-called "war against cancer" or the "war against heart disease". But knowledge derived from the human genome project is likely to make human life much longer. A geneticists was quoted in a medical newspaper recently as saying:

"In theory, there is no reason why immortality couldn’t be achieved."

Foolish ultra-Cartesian thinkers believe that humans are only machines and that all one needs to do is repair or replace the parts for it to keep going indefinitely.

But if the balance between loss of people and replacement of people is altered, there will be more people than ever upon this globe. Will the "population explosion" get much worse? What will be the consequences of this for human reproduction? For example, will China’s "one child" policy become standard practice for all advanced societies? Or is even that restrictive policy too generous for the future? There may be nasty consequences from the possible population increase. For example, will environments degrade even faster than they do now? Will fertility have to drop even lower than it is now? Or will there be an even greater "population explosion". Do we expect that increases in food production will allow more people from wealthy countries to be fed – even if millions from less fortunate countries continue to starve? Where will people live? Where will people find enough water, or jobs, or homes – let alone enough space?

It is possible to go on, but the outline of the problem is clear. Our society will be changed in quite major ways by the knowledge that comes from the HGP.

You would think that such questions would be urgent and immediate. But those running ELSI have been concentrating on certain specific matters like insurance – important in themselves but only a small piece of the problem.

You might ask "how urgent is all this anyhow?" Well, let me help you a bit with that one. Scientists at the ANU discovered that a plant had short roots if a particular gene was not operating. They took some affected plants and fed in the gene with the result that plants grew normally. Roots had normal length after treatment.

So it is happening already in plants.

Much has been made too of the fact that scientists have replaced specific genes in a person to provide an enzyme that was needed.

It is likely that all these capacities to interfere with foetuses or young children will increase fast – very fast.

And when they are ready with the technical know-how, we have to be ready with an appropriate ethical framework.

At present we are not ready.

And there is some doubt that medical graduates with scientific training will be able or willing to address all these questions.

Someone must address them and I suspect that teams, which include social scientists, will make the most productive efforts for us all.

Our society is more than just the science that amazes us day by day. That science progresses but there is a need to match it with wisdom and care. To do this matching properly, the medical scientists may need help from those trained in social sciences. I wonder now how we might design systems which will encourage frightened and proud medical practitioners to turn to those in the social sciences for team help in this and related matters.