The Book of Life

"I know well, demon, that you have penetrated into the darkness of the past, and that you have read, by the light of what torch I know not, every page of my life ..." (quote from The count of Monte Cristo).

The time is coming when we will be able to read the genetic profile of a newborn baby as if we were perusing the pages of a book. Having this data means that we can obtain information about the types of diseases and disorders the baby is likely to suffer from in the future. Of course, having a gene for a particular disorder doesn't necessarily mean that you will end up suffering from that disorder; it only means that that the probabilities are increased (unless, for example, you have the gene for Huntington's chorea, which is a certain death sentence). The news came this week that genetic links have been found to diseases such as type 1 diabetes, Crohn's disease, bipolar disorder and heart disease. Read about it HERE:

My first reaction to this news was a positive one. Knowing that you have the genes that make you susceptible to lung cancer means that you can make some lifestyle choices, such as refraining from smoking, to reduce the probability of being afflicted. Knowing that you have the genetic susceptibility to colon cancer means that you know to avoid it by having a low-fat diet and having periodic medical tests.

But then I came the realisation that there are ethical dilemmas to be addressed, and these are uncharted waters. To whom should your own genetic information be disclosed? Should you yourself be privy to it? I know I would want to be, particularly if I have a predisposition to a serious ailment. But it's not as simple as that.
Should your potential marriage partner know your genetic profile? I suppose there would be cases where it is almost mandatory that your partner must know: what if I am a carrier of a recessive gene for a potentially fatal disease, and I wish to marry my childhood sweetheart, whom I love very much. The problem is that if she also happens to be a carrier, then it is likely that our offspring will be afflicted. In such a case, it makes sense for us to disclose our "DNA books" to each other, but what if our future progeny is likely to suffer from something more benign - like deafness, high blood pressure, sterility, low intelligence, etc.? Should I have children with the love of my life, knowing that our offspring are likely to suffer from Down's Syndrome, or should we instead adopt children? Not accepting a child that is less than perfect is equivalent to selective breeding of humanity; something like eugenics - the philosophy adopted by the Nazis. According to eugenicists, abortion was seen as a means of improving the human race and contribute to evolutionary progress of humanity. Of course, the Nazis were not the only ones to promote some form of selective breeding of humans. In 1994, Nature published an article titled "China's Misconception of Eugenics", which argued that the Chinese government's policy of trying to prohibit couples with certain diseases from procreating had a distasteful eugenic quality. In China, the law requires premarital examinations for serious genetic disorders, mental illness, and also for some infectious diseases such as venereal disease and hepatitis B. If the disorder is sufficiently "serious", tubal ligation or long-acting contraception is required for permission to marry. If childbearing is allowed, prenatal diagnosis and termination of affected foetuses are compulsory. As distasteful as all this may sound, there are other modern examples.
Haemophilia is a sex-linked genetic blood disorder, from which only males suffer. Females may carry the gene without being affected, and pass it on to their male offspring. So, a pregnant woman who knows that she carried the gene for haemophilia could find out the sex of the foetus and, perhaps, choose to have it aborted if it is male because she knows that there would be a 50% chance that she would give birth to a haemophiliac son. According to Australian ethicist Peter Singer, "these practices were widespread in many countries, and yet did not cause any great outcry". Today, we have techniques for definitely identifying haemophilia before birth but, again according to Peter Singer, "... the principle is the same: women are offered, and usually accept, abortions in order to avoid giving birth to a child with haemophilia". there are other conditions that can be detected before birth - Down's Syndrome is one - and, in future, more disorders will be added to the list.
Here is a question: A mother is expecting a baby. She knows it's a boy and she learns that his genetic profile indicates that he will be highly intelligent but he will also contract a crippling disease that will leave him wheel-chair bound for the rest of his life. What would you do if you were that mother? One such baby was born, and he grew up to be world renowned theoretical physicist Stephen Hawking. A person with such a disease can live a happy and productive life, but he could just as easily be destined for a miserable existence.

In years to come, the information written in the "genetic book of life" will come to be unravelled; what should be done with it? How should it be used? Who should be privy to your personal data; the government? Insurance companies? Employers? Potential spouses? Should I be allowed to decide who should know my genetic details? Where should we turn for answers to these kinds of questions?
Science? Science cannot provide ethical guidance, but it can provide scientific opinions and clarify technical issues so that judgements are made with the help of hard facts. However, in the wrong hands, science has been shown to be very dangerous. As we know, Darwinism was the inspiration for eugenics, which in turn inspired the racist policies of the Nazis. The following is a quote from Hans-Walther Schmuhl - a German expert on euthanasia debates before World War 1:

"By giving up the conception of the divine image of humans under the influence of the Darwinian theory, human life became a piece of property, which - in contrast to the idea of a natural right to life - could we weighed against other pieces of property."

And let's not forget other misuses of science, such as weapons of mass destruction.

So, should we look to religion for guidance? Religious organizations - particularly Christian and Islamic - are very powerful and are usually very heavy-handed in their responses when there are threats to their power; they can have input to the debate, but theirs is just one point of view. Morality and ethics are not the domain of religions. I happen to be an atheist yet I think that I have a strong sense of morality - I give generously to charities, I don't steal or kill and I don't covet my neighbour's ass - without needing a non-existent God as a role-model. Furthermore, the morals of many Christians leave a lot to be desired. The most powerful Christian in the world is George W Bush; he believes so strongly in the sanctity of human life that he opposes any form of embryonic or therapeutic stem cell research yet, as Governor of Texas, he presided over more executions (of human beings) than any other governor in the state's history, and he made the decision to go to war against Iraq - a decision that he does not regret and which has cost the lives of many thousands of precious humans. Looking back on human history, how much human blood has been shed in the name of fictitious Gods? So much for religion and its stance on the sanctity of human life.

The questions of what to do with individual genetic information are very difficult, and there are no right answers that would satisfy everybody, but they must be debated openly within our community.
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