Bone marrow registries

The NY Times reports on an effort to start a bone marrow registry in Nigeria, and to increase donation among African Americans: Finding a Match, and a Mission: Helping Blacks Survive Cancer

"Now he is trying to repay that debt, with an effort that experts say may save the lives of both Nigerians and black Americans. In February, he helped start Nigeria’s national bone-marrow registry, the first in Africa outside South Africa. He is now raising money to start a cord-blood bank there.

Millions of Nigerians have blood cancers like leukemia or lymphoma, and about 4,000 black Americans die annually of them. Less than 20 percent of black Americans now find the perfect donor matches that could save their lives, while more than 70 percent of whites do. Without a registry and cord-blood bank, no Nigerians do.

“This is a slam-dunk, from my point of view,” Mr. Adebiyi said. “The U.S. registries are trying to figure out how to increase the population of minority donors; this is a solution they should be interested in.”

Becoming a donor is relatively simple nowadays; only a cheek swab is needed to test for a match. Donating rarely requires the painful hip punctures that used to be routine. Instead, an intravenous blood line runs through a cell separator after the donor takes drugs to push the stem cells into the bloodstream. The process is no more burdensome than dialysis, experts say.

But for African-Americans like Mr. Adebiyi, finding matches is particularly difficult. Blacks are less likely to register as donors; while blacks are 12.6 percent of the population, only 8 percent of registered donors are black.

“It’s lack of education about it, and mistrust of the medical system after scandals like Tuskegee,” said Shauna Melius, co-founder of Preserve Our Legacy, citing the Tuskegee, Ala., experiment in which government doctors recruited black farmers for research and let those with syphilis go untreated for decades. Her organization recruits donors at Harlem Hospital and through drives featuring black celebrities.

“Plus,” she added, “people are skeptical because you’re collecting DNA.”

Complicating the problem, blacks are more genetically diverse than whites. Anatomically modern Homo sapiens existed in Africa for 200,000 years before migrating north to Europe a little over 40,000 years ago, so all Europeans descend from the shallower end of the gene pool.