Hematopoietic stem cell transplantation (HSCT) is indicated for various bone and blood cancers and is increasingly used in non-malignant disease. When the stem cells come from a donor, the transplantation is referred to as allogeneic. With more indications and increasing survival after transplant, the need for donors has increased. Generally, donors must be matched by human leukocyte antigen (HLA) type, which limits the donor pool dramatically.
In some instances, limited donor availability can lead to ethical dilemmas. At one institution, a potential recipient’s HLA-matched sibling did not have the intellectual capacity to consent. Though the donor communicated through a legal substitute decision maker (SDM), there is limited guidance on ethically obtaining consent and whether an SDM can do so.
A team from the Princess Margaret Cancer Centre, Toronto, Ontario, sought to develop an ethically and legally informed standard of practice for donors of diverse cognitive abilities. The Canadian Medical Protective Association gave legal guidance.
To address the ethical and practice questions, the authors “sought guidance from established programs in the pediatric care setting. A case team was assembled with experts from the HSCT program, bioethics, legal, and communication specialists in collaboration with the potential donor and their family.” The authors adapted criteria from The American Academy of Pediatrics Committee on Bioethics to develop a bioethical framework.
The final criteria for obtaining consent from a cognitively incapable adult donor included the following: “1) there must be no medically equivalent histocompatible relative who is able/willing to donate; 2) the donor and recipient must have a strong existing personal and positive relationship; 3) there must be a reasonable likelihood the recipient will benefit from HSCT; 4) clinical, emotional, and psychological risks to the donor must be minimized; 5) ensure minimal risk to the donor, 6) donor assent must be obtained as far as possible.”
The authors advocate for a standardized framework that adheres to ethical and legal principles for the equitable care of a diverse donor population. They concluded that “when it is identified that a donor may not have the mental capacity to provide informed consent, a donor advocate policy should be developed/initiated.”
Heffering-Cardwell M, Tinker L, Garmaise C, et al. Donor Advocacy – the Need for an Ethically, Legally, and Morally Informed Framework for Adult Donors for Allogeneic Hematopoietic Cell Transplant. Abstract #604. Presented at the 2023 Tandem Meetings of ASTCT and CIBMTR; February 15-19, 2023; Orlando, FL.