cakedays - the effect of seeking consent, and the then people refusing, should not be used as an excuse by researchers not to seek that consent. If they are worried that not enough people will seek consent, they need to find another way that people will consent to. The RECs would need to go back behind their closed doors and do some more debating.
And it is not about NoK interfering with patient choice - it is about the NoK informing the NHS what that patient choice is in the first place. It is not nonsensical - who are the NHS to decide what the patient wants? The NoK would be better at protecting patient autonomy.
And you do have a legal and moral right to give consent - it is not a 'fiction'. If I consent to treatment, and then something happens to the data that is created that I was not informed about during the consent process, and to which I object, that consent then becomes invalid and the treatment therefore was an assault, for which the healthcare 'professional' would be criminally liable.
So yes, consent should override research into saving lives. If people trusted the system, I would be more than happy to provide consent. But trust is breaking down.
You could refuse treatment for Ebola - there might be enforced quarantine, but they couldn't treat you for it if you had refused.