New technology case study: Genetic testing
We have a growing capacity to test for genes that cause
or predispose to disease, but the take-up of this technology is not
straightforward.
Some of our genes affect our chances of contracting diseases. So
the idea that it would be good to know the details of the genetic
hand you have been dealt has been around for many years. But as it
has come nearer to reality, the application has become less
straightforward.
On one hand, tests may tell you things you can do nothing about,
like identifying who in a family with a history of Huntington's
disease will definitely develop the condition. Many people offered
this test decide they would rather not know.
On the other hand, tests may be a very poor guide to what might
actually happen, so although you may be genetically more likely to
get a particular disease, this does not necessarily mean you will
go on to develop it. Most diseases are affected by lots of
different things, and genes play a small part. The gene tests now
marketed over the internet generally fall into this category. They
are unlikely to provide much useful information.
There are also problems with making the tests reliable and
explaining to people how they should be interpreted (usually
carried out by genetic counsellors). The gene which, if both copies
have an altered form, causes cystic fibrosis (CF) can have over 500
different mutations. Tests only pick up the more common ones. Then
there is the practical issue of getting a technology adopted by the
NHS. CF screening is offered in some but not all areas.
So even with this relatively simple biological situation, the
introduction of new technological approaches is hugely complex.
And that's without public fears about insurance companies using
genetic tests to refuse people health cover, life insurance or
access to mortgages…