That’s the headline of an excellent article that appeared in Time Magazine back in December 2012 (if you’re a subscriber, you can still read it online here: http://www.time.com/time/subscriber/article/0,33009,2131532,00.html). (I’ve kept a copy and can email it if you’d like).
It deals with the questions being raised as a result of the rapid advances in genetic science. Most importantly, should people be screened (and told results from that screening) for conditions that currently have no cure?
A positive diagnosis of FA can only be given via a DNA test, but it has implications for others in the family too.
It’s highly unlikely either parent could have known they were a carrier since there are no symptoms, but of their children each would have a 1-in-4 chance of having FA, a 1-in-2 chance of being a carrier (also having no symptoms) and a 1-in-4 chance of not having inherited any part of the defective gene. So should all their children be tested?
I’m an FAer so I believe it’s always better to know, but many others (including many of my siblings) would prefer not to know. They already have children of their own and “no symptoms apparent anywhere so why even test?” is their thinking.
Should it be up to them? If they’re ever screened for anything else and the doctor sees that they’re a carrier, should they tell?
If it were up to me, every child would be tested at birth so a carrier would know the risks in case they might enter a relationship with another carrier. But the government’s position is that it would be an expensive test without specific benefit no matter the findings so they wouldn’t fund it. If funds were available there are other things they’d prefer to test for.
My problem with the other is that they can mostly only speak of “a predisposition” to developing a certain condition whereas FA is either “yes” or “no”.
I guess it’s easy to allocate the health budget when I’m not the Health Minister!