Who can give consent? 

The law recognises that a child can consent to their data being held or accessed under the Data Protection Act 1998 and GDPR May 2018, if the child has reached an age when he/she can decide for himself/herself whether or not to agree. It is generally accepted that by the age of 12 a child can be expected to have sufficient understanding to decide whether or not to agree to their data being supplied, or accessed.

If the person with parental responsibility feels that the child does not have sufficient understanding to consent, then the parent can consent on the child’s behalf until the child either reaches such understanding or the child reached the age of 18 whichever is the earlier. Where a child is under the age of 12 then parental consent will always be required.

Statement of consent 

By accepting to join the DMD Registry I confirm the following:

  • I have read the contents of this legal information.
  • I confirm that I have read and understood the information provided and have had the opportunity to ask questions.
  • I confirm that I have had sufficient time to consider whether I want myself to participate in the Registry.
  • I understand that my participation is voluntary and that I am free to withdraw at any time, without giving any reason, without my medical care or legal rights being affected.
  • I understand that my data may be looked at by a responsible individual authorised by Action Duchenne Ltd and the Steering Committee, for specific research or treatment. I give permission for these approved individuals to have access to my information.
  • I agree to take part in the Registry.
  • My child is under the age of 12 and I am signing on behalf of my child as a person with parental responsibility.
  • My child is aged between 12 and 18 and does not have the capacity to understand why his consent is being sought. I am giving consent as the person with parental responsibility. 
  • I am over the age of 12 years and I have understood the purposes for which my consent is being requested which have been explained to me.

Parental responsibility 

The person(s) with parental responsibility will usually, but not invariably, be the child’s birth parents. People with parental responsibility for a child include: the child’s mother; the child’s father if married to the mother at the child’s conception, birth or later; a legally appointed guardian; adoptive parent; the local authority if the child is on a care order; or a person named in a residence order in respect of the child. Fathers who have never been married to the child’s mother will only have parental responsibility if they are registered on the child’s birth certificate, if they have a court order granting parental responsibility, or a parental responsibility agreement.