|It's curious that just as human life in the rich west gets safer and better,we seem to have become unreasonably fearful.|
Here is the critical boundary: at present
they can create embryos in dishes and check whether they have a fatal gene,
such as cystic fibrosis, to help parents, such as two in this film who have
already suffered the heartbreak of watching a child die of this disease,
make sure that their next children are free of it. This is relatively
uncontroversial, except among those against abortion. Few would think the
avoidance of such human misery anything other than a great advance in science.
But it raises questions about what other changes parents might like to see
in their newly conceived embryo. A couple recently were refused permission
to choose to have a girl, to replace a little girl who had died, when they
already had three boys. In Britain the supervising authority scrupulously
monitors each step along this path to avoid "designer" babies, only allowing
gene selection to avoid mortal illness.
But here is the really difficult problem.
Prof Winston travels to Sardinia, a Mediterranean island plagued by a gene
that causes a dreadful disease - beta thalassaemia. It prevents sufferers
from forming normal red blood cells. Even with multiple blood transfusions,
they have a short and unhappy life expectancy. It affects a frightening one
in eight babies conceived. Although this is a Catholic country, many couples
now choose to have a test on their unborn child and to abort those with the
deadly gene, causing them great trauma, made even worse by their religious
There is now a possible way of wiping this disease out for ever, and relieving people in populations where it is prevalent from much despair .But it would involve a radical new form of genetic engineering. Instead of waiting for a child to be conceived, at birth the whole male population could have their testes injected with healthy gene that would then go on for ever to produce health disease-free sperm. End of problem? No, this is where an alarming new boundary is crossed.
It would change the genes of those children,
and their children, permanently, with no possibility of reversing this change.
It's one thing to tamper with the genes of one child in the hope of creating
a s disease-free infant, quite another to alter the genetic code permanently.
Winston points out that humans are the product of
millions of years evolution. Do we know enough?
What might the gene do that we don't yet know? The results of altering it
might not emerge for generations and maybe unpredictably frightful and
Winston is an optimist. He has seen the
good science has done for families in his own lifetime, the diseases avoided,
the healthier children born. But there are many who are wary of stepping
into unknown territory, however good the immediate results seem to be. With
the terrible tale of BSE fresh in British minds,
people are not inclined to trust scientists, nor
policy-makers. Had we known about what seemed like a small risk, we might
have chosen not to eat beef, to have ordered farmers to destroy their herds
and certainly to forbid them from using animal carcasses in feed for cattle.
Tough on farmers, but for the rest of us, a small sacrifice. This is different.
Here is a chance of a great good, where one in eight children are born with
a horrible disease, and all couples in these areas live with the terrible
threat of it hanging over them. For them a small but unknowable
risk of what might be a disaster at some later
date may seem worth taking.
We are not good
at thinking about risks. Winston as a scientist is trying to remind us
to balance the good with the fear. It's a curious phenomenon that just as
human life in the rich west gets safer and has
better, living longer and healthier lives, we seem to have become unreasonably
fearful. We are encouraged by a hungry press to get hysterically angry
and frightened of remote dangers, blaming science, without appreciating how
safe we are off compared to any other generation. No doubt we are right
to examine mobile phones, electricity pylons,
GM vegetables or chemicals in foods. But we are
not much good at setting these possible risks in
any kind of context. And we are very bad at celebrating of the great good
fortune science has brought us in it the past century. When Winston started
out on his fertility work, there was much hysteria about "test-tube babies",
but it's now an everyday part of medicine - and that has been progress.