Background:
Allogeneic haematopoietic stem cell transplantation (allo-HSCT) is offered in patients with certain haematologic malignancies and non malignancies, which are uncommon when compared to solid cancer tumours. When allo-HSCT is indicated, identification of a suitable donor is often a matter of urgency. Donation by a patient’s family member presents substantial psychosocial, ethical, medical and medico-legal challenges different from those presented by volunteer unrelated donors. These issues are more complex when donors have impaired capacity or are <18 years old. The World Marrow Donor Association (WMDA) has standards for the care of unrelated donors (URD) and matched family donors once identified. However, there are no existing guidelines for the pre-test counselling and consent processes particularly in those potential donors who have impaired capacity.
Aims:
To develop specific procedures for the care of potential donors who have been identified with impaired capacity, prior to human leukocyte antigen (HLA) typing, and improve overall family donor service delivery.
Methods:
We assessed the incidence of family donor searches for transplants undertaken at The Royal Melbourne Hospital (RMH) or one of our major referring institutions, over an 18 month period where there was identified impaired capacity for consent in potential donors.
Results:
A total of 706 family members were HLA tested between Jan 2013-June 2014. From these we identified 15 potential donors who had impaired legal capacity to consent to HLA testing due to intellectual impairment (n=2), <18 years old (n=12), psychiatric illness (1). In the cases of intellectual impairment there were significant medico-legal implications that delayed HLA testing and release of the results.

Conclusion:
We have implemented procedures for the pre-screening and education of family members, obtaining informed written consent prior to undertaking tissue typing. This process has helped address family concerns, enhance administrative processes and mitigate potential delay in the timing of donor identification.  Evaluation of family donors who lack capacity presents an opportunity for haematological transplant centres to examine current policies, procedures and improve overall service delivery to all potential family donors.