The stigma of genetic disease

by Beverly & Pack

Huntington’s cases underestimated

[Via Health News from NHS Choices]

“There are far more people with Huntington’s disease in the UK than has been assumed,” said The Guardian. However, stigma and fear of insurance companies leads many to keep their condition a secret, it added.

The news is based on two articles about Huntington’s disease, a progressive, inherited disorder that affects the nervous system, for which there is presently no cure. The disease typically appears in middle age, affecting muscle co-ordination and leading to cognitive decline. One article discusses the negative medical and scientific attitudes towards Huntington’s, which, in the past, had supported the sterilisation of families who carry the gene. The other is a commentary that argues that the estimated prevalence of Huntington’s may be double the standard estimates of about six to seven in 100,000, but that stigmatisation and financial penalties in insurance policies may lead people to conceal the condition.

The articles are timed to coincide with the launch of an all-party parliamentary group to promote greater understanding and awareness of Huntington’s. While both are based to some extent on personal opinion, they highlight a serious issue for sufferers of the disease and their families and will perhaps lead to advances in both treatment and perceptions of this devastating illness.

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The way society deals with Huntington’s disease – a genetic disease for which there is as yet no cure – will give us a hint of what we might expect when each of us has our complete genomes sequenced.

We will have the technology quite soon to determine the genomes for individuals at a very low cost. each of us will then know all about all sorts of genetic problems we each have. Not all will be a devastating as Huntington’s but it is quite likely that many of us carry genes that can be called ‘harmful.’

The stigma still attached to a well-characterized disease may be repeated a multitude of times for almost all of us. I wonder how society will deal with that?