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"At the moment it is an ethical question. Would someone want to know their risk of dying if we could do nothing about it?"
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I don't want to know if I'm going to die with no hope of a cure, I want death to be a complete surprise. None of this drifting gracefully into the grave for me, oh hell no. I want to skid in sideways with a burger in one hand, a pint in the other, listening to heavy metal and screaming "woohoo, what a ride"
However, if they found something and could cure it, that is a completely different matter. I would want to be fixed up asap.
I think the only way round this conundrum is if there is a cure, tell me, stick me on the operating table and do your stuff. If it's hopeless, lie through your teeth, give me a clean bill of health and let me wander out of the surgery whistling a jaunty tune.