Voluntary bone marrow or hematopoietic stem cell donations take place with related or unrelated donors. What are the motivations and pressures behind this altruistic act?

The compact Oxford English Dictionary defines altruism as ‘unselfish concern for others’. Volunteer bone marrow or stem cell donations could be seen as examples of altruism, but how do the motivations and pressures differ for the related and unrelated donor? Can the term ‘informed consent’ be considered applicable in both cases and what are the predominant feelings after the donation?

The Related Donor

The term 'related donor' refers to a sibling donating to their brother or sister.

The matching criteria for any given donor and patient is based on the compatibility of their Human Leukocyte Antigens (HLA), three of which are inherited from the mother and three from the father.

A sibling donor has approximately a 25% chance of being compatible with their brother or sister.

Before undergoing a voluntary procedure, informed consent needs to be obtained. In the related setting can this be obtained objectively, particularly if dealing with paediatric siblings?

A report on paediatric sibling donors published in the Journal of Paediatric Psychology (vol 28, no 4, 2003, pp 220-230), noted the majority of siblings in the study felt they had no alternative to becoming a donor.

A sibling who was eight years old when they donated commented in the report:

"I thought that you might have died through it. I didn’t know you could make more bone marrow and stuff. I was pretty wrapped up in that it was a life and death procedure so I didn’t really think about asking anyone. I should have been told more about the operation. I wasn’t really prepared."

The report concluded that siblings in both successful and unsuccessful transplants generally reported positive reactions to the process.

Negative Reactions to Related Donations

However, to balance this result, the New Scientist published details of a study by Wendy Packman and Mary Crittenden (23 August 1997, page 20) suggesting a more negative reaction can also occur.

The team investigated 44 children between 6 and 18 years of age whose sibling had received a bone marrow transplant; 21 were donors and 23 were not.

A third of the children in both groups showed some indication of post-traumatic stress that seemed related to the transplant. Examples given were fear of hospitals, frightening dreams about the transplant and a worry the experience may need to be repeated.

The donors in the study also reacted differently to schoolwork. Siblings that donated were reported as more mature and possessive of leadership qualities while non-donors had a tendency to be more disruptive in the classroom.

The Unrelated Donor

By its very nature the unrelated donation is anonymous.

National registries such as the Anthony Nolan Trust (ANT) in the UK and National Marrow Donor Program (NMDP) in the US, hold HLA details of volunteers which can be accessed by treating physicians searching for suitable donors for patients in need of bone marrow or hematopoietic blood stem cell transplants.

Informed consent is a tenet of volunteer registries.

Medical criteria must be adhered to and information on the relevant donation procedure, together with details of risk and after effect, is produced in written form for each volunteer prior to joining the donor panel.

This information is repeated as a donor progresses through the stages of compatibility testing and a consent form must be signed prior to the donation commencing.

Whereas the individual motivation for a volunteer wishing to join a registry will be subjective, the anonymous nature of the donation enables consent to be objectively obtained by healthcare professionals.

The Motivation for Donation

Motivation in the related and unrelated setting can be deemed altruistic, but the potential psychosocial pressures of the related donor make familial influence worthy of further study.

Related Article

Donating Bone Marrow or Stem Cells.

Further Information

Anthony Nolan Trust

National Marrow Donor Program