Consenting for others
In cases where someone may not be able to give consent for themselves, such as being under the age of 16 or not having capacity to do so, they will still be able to donate their genomic data to the National Genomic Research Library through their parent, guardian or consultee.
A ‘consultee’ is someone who is making a decision for somebody else considered to be unable to decide for themselves. If you are asked to be a consultee, you should consider how they most likely feel about participating in research.
As a parent or guardian, you will need to decide on behalf of your child if you want them to take part in the National Genomic Research Library. If you don’t want them to, they won’t be included. At least one person with legal parental responsibility needs to complete the ‘record of discussion’ form. Where appropriate, your child can be involved in making the decision to take part by completing a young person’s assent form which will be provided by one of your healthcare team.
If you have been asked to be a ‘consultee’, this means you are making a decision for somebody who is considered to be unable to decide for themselves. You should consider their likely views and interests and set aside your own personal views about participating in research.
One of your healthcare team will ask you to sign a consultee declaration form; this document provides more information about the responsibilities of the role.
Sometimes, your healthcare team might ask for permission to collect a sample from a relative shortly after their death. This may be to help understand more about your relative’s health conditions, for the benefit of other family members, or other patients with the same condition.
You might be asked to decide if the data from a deceased relative can be included in the National Genomic Research Library