Huntington’s society misses the mark..

I have to admit, I’m really disappointed in the Huntington’s Society of Canada.  They’ve released a commercial (which I only saw for the first time this morning),  that could have been done so much better.

Instead of framing the conversation around the fact that the Canadian medical system (though, medicine in Canada is provincial, not federal), has not yet come to terms with genetic testing and doesn’t offer either legal protection against genetic discrimination (which it should) or adequate support for people who find themselves with a genetic condition (which it also should), the advert basically casts the testing in the role of the evil-doer, with the goal of making it illegal to discriminate based on genetic risk factors.  Fair enough, we shouldn’t be discriminating on genetics.

What really irks me, however, is the theme of the commercial, and the tag line they put in the film is just ignorance:

“Being tested puts you at-risk.”

In fact, it’s not being tested that puts you at risk, it’s the lack of confidentiality of your condition that puts you at risk.  (Ahem, your medical records in Canada are confidential anyhow.)  The knowledge itself does not change your likelihood of having the condition, and any discrimination that occurs comes as a result from sharing the knowledge with potential employers (why would you?) or insurance agents (is that what they want legislation against?).  At the moment, neither require genetic testing, so it’s clearly a message aimed at scaring people into acting before it does become a problem.  But that’s my main issues: they’re scaring people away from genetic testing based on something that currently is not a problem!  Having the knowledge does not translate into a new-found risk of discrimination in Canada, but not having the knowledge does translate into being unable to adequately prepare for the future.

You could make the same bad argument that any technology able to give us insight into future events puts you at risk.  <sarcasm>Weather Forecasting? Yeah, that’s bad, you might panic if you knew there was a storm headed towards you, so you shouldn’t be allowed to get weather forecasts.  Or how about engineering reports?  Knowledge that your house is falling down might raise your insurance rates…. we should stop allowing engineering reports to influence our house insurance!</sarcasm>

You’ll notice that in both of those examples, there’s something you can do, once you have the knowledge of impending problems:  Prepare for it, or try to fix the problem pro-actively.

In the case of Huntington’s, we don’t have a cure, so you might think they’d promote that message: we can test for the gene, so maybe it’s worth investing in understanding and finding a cure for it.  Nope… that’s not the message.

So maybe we should then invest in building the infrastructure to help people who are going to suffer from the disease prepare and cope with it… Nope.  Not that message either.

The only take away messages you can glean from this commercial are: knowledge is a bad thing, and we need laws to keep knowledge out of the hands of those who might use it against you.  I don’t want to trivialize the impact of the knowledge of genetic conditions on someone’s life, but promoting wilful ignorance is clearly not the message we need to be sending.

So, for that reason, Huntington’s society of Canada, I’m seriously disappointed in you.  You could have done so much better.