Informed consent can be taken at any time after the birth of a child. We appreciate that each cleft service will have a different processes in place to do this.
We have been asked whether or not it is too late to take consent once the child is no longer an infant. For example, when the child turns 5 years of age and attends five-year clinics.
It is not too late to allow families to make an informed decision at this point in time – or at any other point in time. There is no statute of limitations on the age at which consent is taken.
We have also been asked whether or not consent can be sought at a second point in time, if previously declined by the family.
Having considered the ethics of asking for consent again, when a family has declined previously, with a steer from our Data Protection Officer, we advise that: If, after full discussion, a family decline to consent to CRANE audit data collection further discussion could be perceived as coercive. We advise that, once a decision is made, unless the family approach themselves having changed their mind then we should respect the original decision.