Protecting Minor Donors of Hematopoietic Stem Cells: A Survey in EBMT Transplant Centers

Introduction

Hematopoietic stem cell (HSC) donation by minors is a well-established practice. According to the literature, up to one-third of pediatric HSC transplants involves donation by minors, most often siblings. Even though HSC donation involves a medical intervention without direct physical benefit to the donor, a broad consensus exists about its acceptability, as it is potentially life-saving for the recipient and carries no more than small risks but conceivably significant psychosocial benefits for the donor. However, because it concerns an intervention on a patient who is considered vulnerable due to age and from which that person will not physically benefit, protective measures have been proposed in ethical guidelines and position papers published by national ethics committees and professional medical organizations. However, no studies have been conducted to assess whether, and, if so, how, these safeguards are implemented in the practices of transplant centers.

Methods

A cross-sectional descriptive survey on practices regarding HSC donation by minors was prepared and distributed via email through the office of the European Society for Blood and Marrow Transplantation (EBMT) to 262 EBMT member centers. The survey included closed-ended as well as open-ended questions that assessed: (i) the conditions that have to be met before HSC donation by a minor is accepted; (ii) the approval process; (iii) how consent is obtained from the minor; and (iv) potential psychological support and follow-up. Answers were collected between March 2016 and June 2017. Descriptive statistics for closed ended questions and qualitative content analysis for open questions were used for data analysis. The study was approved by the EBMT Pediatric Diseases Working Party.

Results

Forty out of 262 transplant centers from twenty countries completed the questionnaire, constituting a response rate of 15.3%. Altogether, these centers have reported 5,337 HSC donations since 2010, of which 1,651 donations were made by minors (30.9%). The proportion of HSC donation by minors ranged from 0.5% to 100% among the included transplant centers.

Twenty-seven centers (67.5%) reported having in place specific guidelines or protocols with regard to HSC donation by minors. In 80% of centers minors can be evaluated for HLA compatibility simultaneously with adult family members, while in the remaining 20% of centers minors are screened only after all adult family members are found to be medically unsuitable to donate. Nearly half of transplant centers (47.5%) only allow minors to serve as donors for siblings, whereas the others also allowed donation to other close relatives, such as parents, grandparents and cousins.

Whereas all of the participating centers described efforts to include minor donors in the decision-making process in a way that is in accordance with their age and maturity, significant differences exist with regard to final approval of the donation. After obtaining consent from the donor and his/her parents, fifteen centers (37.5%) do not require any additional approval, whilst the other centers seek permission from a local or national ethics committee (40%), an independent physician (5%), social worker or donor advocate (5%), or the court (7.5%).

An independent donor advocate, whose purpose is to promote the wellbeing of the donor and is not involved in direct care of the recipient, was appointed in about one-third (35%) of the centers. Psychological support to the donor and his family after the donation is routinely provided by 70% of the centers.

Conclusions

This is the first study to examine HSC transplant center practices relating to donation by minors. Although all of the participating centers are members of the EBMT network, our research findings reveal significant differences with regard to: (i) the use of specific guidelines and protocols for HSC donation by minors; (ii) the screening of potential minor donors when a compatible adult minor may be available; (iii) the categories of recipients that may benefit from HSC donation by minors; (iv) the need for, and type of, final approval by an independent body; (v) the availability of a dedicated donor advocate; and (vi) the provision of psychological support to and follow-up of minor HSC donors. On the basis of these findings, we suggest that further efforts to harmonize practices involving HSC donation by minors should be undertaken.