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June 22, 2006
The ethics of gene research
Gene research is once more in the news, and as usual, opinion is polarised. Partly I suspect that this is because the tabloid press likes nothing better than to play up public fear on these sorts of issue, and partly it is down to a very vociferous lobby that appears to want to stifle all research which may result in the human race addressing some of the major genetic disorders affecting us all. There is a very serious question on the ethical level in tampering with our genetic material, but it relates, in my view anyway, more to the use of genetic manipulation to create "super humans" or to ensure that a child is a certain sex, and not to the elimination of disabling conditions or cancers!
I am amazed at the "spokespeople" from disabled groups who want to block any attempt at screening genetic defects which are passed from parent to child - some of them, like cystic fibrosis, lethal to the child affected - while the carrier may suffer nothing at all. Why, I ask myself, condemn a fellow human to a life of difficulty, pain or endless medical care because your vision of the world dictates that some people must be that way, when a fairly simple screening process can identify the gene and the carrier - and prevent the gene being passed on, or modifying it so that the defect is not passed on. I have difficulty, and I am told by those who espouse the "let the disabled be disabled because they are just as valid as the rest of us" lobby that it is because I am prejudiced against disability, in accepting that it is ethical to condemn someone to being born without ears, or without eyes - or limbs or a a functioning digestive tract, bowel, liver or anything else you care to choose, simply because "they are valuable people through their disability". I find that both patronising and downright distasteful.
Then there is the question of screening for genetic defects which cause cancers. Some people feel that we should not be doing this either on the grounds that it might cause undue worry or prohibit people from taking out life insurance or even pensions. There are arguments raised about the risk that employers might refuse to employ someone who MIGHT be suceptible to cancer at some stage of their lives. But, by the same token, if cancer is, as we now seem to have evidence to support the hypothesis, genetic in origin, then we should be looking seriously at identifying the genes and trying to find ways to repair damage or "switch off" the cancer causers. To proclaim that this "demeans" the suffering of those who have suffered or died of cancer is a nonsense.
The debate on the ethics of genetic research is being clouded by the illogical stance of those who seem to want to argue that to find cures for, and to prevent, future deformity or disablility somehow "demeans the contribution" of the currently disabled. It is, of course this illogical argument that the tabloids love to promote since it evokes visions of Dr Frankenstein (Remember the Frankenstein Foods debate?) beavering away to create a hideous monster with the aid of Igor the hunchback henchman. Nothing like scaring the public into thinking they are all about to be herded into some sort of mass production cloning unit to be turned into obedient zombies for some scientists mad dream to really sell a few more scurrilous rags.
There are, as I have said, some serious issues to debate about the ethical questions raised by some research, but can we please get away from the illogicality of arguments about whether or not someone with a disability is "demeaned" by offering to prevent their children suffering the same fate? That is to abrogate intelligence and is frankly of service to no one. I suppose it should not surprise me either that the people making these sort of declarations on behalf of sufferers of Cystic Fibrosis, genetic deafness or any of the many other genetically transmitted disabilities - are never themselves disabled. Could it be that curing the problems they claim to represent would deprive them of their little corner in the spotlight? Could that be the reason for their opposition to this research?
Its time to sort out the ethical questions and to get them right. It is also time to make sure the politicians don't get involved in the ethical debate - ethics and politicians have never sat at the same table.
Posted by The Gray Monk at June 22, 2006 08:34 AM
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