Study examines role of race and ethnicity in stem cell donation

Published on December 21, 2012 at 3:44 AM · No Comments

New research examining the role of race and ethnicity in an individual's decision to become a donor for hematopoietic cell transplantation (HCT) identifies several factors associated with varied participation rates in national donor registries across racial/ethnic groups. Results of this first-of-its-kind study are published online today in Blood, the Journal of the American Society of Hematology (ASH).

Hematopoietic cell transplants serve as valuable treatments for a range of blood disorders, as they generate new, healthy blood cells to replace diseased cells. While cells from related donors offer the highest success rates, similar successes can be achieved using cells from unrelated donors that are available through large registries, such as the the Be The Match Registry- (operated by the National Marrow Donor Program- [NMDP] and Be The Match-), to patients who cannot identify a related donor. Overall participation in HCT donor registries has grown in the last decade, allowing more patients to find unrelated matched donors.

However, the NMDP and Be The Match still face challenges in finding donors for minority patients in need of stem cell transplants. One barrier to matching potential HCT donors with those in need of a potentially life-saving transplant is the fact that patients of non-Caucasian descent often have less common types of human leukocyte antigens (HLAs, protein markers found on immune system genes that determine the compatibility of the donated cells).

According to NMDP and Be The Match data, another important barrier to minority donation for HCT is that when potential minority donors are notified that they are a match for a patient, they are more likely to opt out of registry participation than Caucasian potential donors. During this stage of the donation process (called the CT stage), in which potential donors are contacted for confirmatory HLA typing blood tests and receive information about the medical risks associated with the donation process, Caucasian potential donors are 30 percent more likely than donors of other ethnicities to agree to move forward with donation. This racial/ethnic difference in attrition rates at CT stage has remained a largely unstudied phenomenon.

To better understand why minorities opt-out of a registry and to gauge the influence of race and ethnicity in that decision, a team of researchers led by Galen Switzer, PhD, Professor of Medicine, Psychiatry, and Clinical and Translational Science at the University of Pittsburgh School of Medicine, initiated an observational study with the NMDP. Dr. Switzer and his team conducted telephone interviews with randomly selected Be The Match Registry members who had been notified that they were matched with a potential recipient and had decided either to continue with donation (843 participants) or who had opted out of the registry (224 participants). The sample group included only those participants who had not previously donated stem cells, and represented a range of ethnicities (28% Caucasian, 25% Hispanic, 21% Asian/Pacific Islander, 19% African American, and 7% American Indian).

Based on previous studies, the researchers examined a variety of factors associated with attrition from the registry among individuals of various races, including demographic, cultural (such as religious beliefs and mistrust of the medical system), psychosocial (including anxiety and depression), and donation-related (such as concern about health complications) reasons for withdrawal.

After analyzing the results, the team observed that ambivalence about donation was the factor most strongly associated with potential donors' decision to opt out of the process, a finding that was consistent across all potential minority donors. Dr. Switzer and his colleagues also found that four factors were particularly important in terms of their association with minority group membership and increased risk of attrition: As compared to whites, minorities reported more religious objections to donation, less trust that donations for HCT would be allocated equitably, more concerns about donation, and a greater likelihood of having been discouraged from donating.

In contrast, minorities appeared to be less likely to opt out of the registry if they reported that being a potential donor was an important part of their identity and if others in their social group were aware that they were potential donors.

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