Bone Marrow and PBSC donation where the donor is an adult lacking capacity or child without competence

I am a Clinician/Stem Cell Coordinator/Bone Marrow Transplant Specialist Nurse. What are the procedures that must be carried out before a referral is made to the HTA?

The guidance clarifies the practices that should already be in place to undertake removal of regenerative material within the law, and put the donor’s best interests at the forefront of any decision.  

Key issues to be aware of:

  • The person giving consent (in cases where the donor is a child) must have parental responsibility for the child donor and the HTA will need to be assured that this is the case.
     
  • A capacity/competence assessment must be carried out on all child donors, except where it is clear the donor lacks competence, for example, if the donor is a very young/pre-verbal child.
     
  • The referral letter must confirm that the clinician with responsibility for the donor has had a conversation with the person consenting on behalf of the donor, about how they have considered the best interests of the donor in their decision. The letter must also confirm that the clinician is satisfied that the donation is in the best interests of the donor.

It is important to continue to explain the role of HTA to families and provide the HTA leaflet ‘Our role in bone marrow and peripheral blood stem cell donation’ available on the HTA website. 

What will the HTA do if a donor is referred who has capacity to make a decision about donation themselves?

The HTA only has the power to make a decision on a case if the donor is a child not competent to consent, or an adult lacking capacity to consent. The HTA must therefore explore competence before confirming whether or not we can make a decision on the case. If a child appears to have competence based on the AA interview, the HTA may:

  • request that the clinician referring the case provides the HTA with details of the competence assessment that was undertaken; and
     
  • if the matter remains unclear, make an application under the Children Act 1989 for the Court to decide if the donor child is competent to make their own decisions about medical treatment. The Court would then decide whether the child has competence to consent to the procedure for themselves.

Can children ever make the decision to donate bone marrow or PBSCs without HTA involvement?

Yes. The law is clear that a child becomes legally competent to make their own decisions on medical treatment matters when the child has sufficient capabilities and intelligence to fully understand what is proposed. If a child has this level of understanding and intelligence the child can give or refuse consent on his/her own behalf. 

There is no threshold age when children become competent; this should be assessed on a case by case basis.