Race matters for patients and donors

Posted July 8th, 2010 by Be The Match and filed in Donor Stories, Patient Stories
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People of all racial and ethnic backgrounds need transplants. Diagnosis with a life-threatening disease can happen to anyone. But when it comes to matching, a patient is more likely to find a donor from the same racial or ethnic background.

Transplant recipients Mary, Anna, Ricky and Hend
In 2009, the National Marrow Donor Program facilitated nearly twice as
many transplants for people from racially or ethnically diverse heritage
than we did five years ago, but some patients still face a challenge in
finding a match.

The reason is that the tissue type markers used in matching are inherited. Some combinations of these markers are more common in some racial groups than others. That is why people are more likely to match someone from their own race or ethnicity.

Reaching out to diverse communities
And that is why Be The Match works hard to reach out to diverse racial and ethnic communities. This month (July) we are celebrating African American Bone Marrow Awareness month. Next month we’re holding marrow donor drives at Marian Days, a large Vietnamese American gathering. And every month, we hold marrow donor drives at organizations and events nationwide where large groups of people sharing similar background gather.

Be The Match Registry is the most diverse donor registry in the world, but we still need more people from a variety of backgrounds to join the registry – so that more patients can be helped.

8 Responses to “Race matters for patients and donors”

  1. Ashley says:

    I’ve always wondered this and wanted to ask…
    If I recall correctly, I was given the option of “White Caribbean” when I signed up for the registry. (I always carry my card proudly!) I remember being excited to check it because I usually can only check “White” on forms, since the White Caribbean option isn’t there.
    Even though, like most White Caribbean people, I do have Yoruban blood, it’s not much. Still, I wonder if that tiny bit of Yoruban is why White Caribbean donors are sought out?
    It just always strikes me as interesting, so I figured I’d ask. 🙂

  2. Stacy Thieszen says:

    Hi Ashley,
    I work at Be The Match and I checked in with one of our experts in our BioInformatics department. He said that you’re exactly right.
    Having the Caribbean categories on the member registration form is because people from the Caribbean may have different ancestral backgrounds than the related continental populations. He said that for Caribbean populations, there is more mixing of European, African and Hispanic/Latino origin groups. Having this information is valuable for identifying the best-matched donor for a patient.

  3. T. McKinney says:

    What if you don’t know what your make up is. Should you be tested to find out? My mother was biracial and born in a place and time when correct information was not documented. Assumptions were made based on visualization not scientific data.

  4. Be The Match says:

    @T. McKinney- If you want to get on the registry you can visit http://www.bethematch.org/join. Then you will have documented information in our system that will be search-able to patients in need.

  5. Basque_girl says:

    When my sister and I signed up at a Basque event, we were told to write “Hispanic/Latino” as our race, not “Caucasian” as we’ve been doing all our lives. In fact, we are mutts of the European variety, immigrants from France with strong Basque blood ties on one side of the family. Why does this race info matter for the registry? Are the DNA results not stored primarily as numerical data rather than as these blurry sociological categories?

  6. FertilAid  says:

    Wow this is a great post! I was touched..
    Please keep up the good work guys..

  7. T. McKinney says:

    My question was not answered. Basically I am asking is there a test that tells a bi-racial person what they would be considered and is it important to know for donor purposes?

  8. Stacy, from Be The Match says:

    @T. McKinney – Sorry the previous response did not answer your question. Currently we rely on donors’ self-identified race and ethnicity. The testing we do for matching (HLA testing), could help identify a person’s ancestry and the NMDP has done preliminary investigations to see if this would be useful for donor-patient matching purposes in the future.
    To give a little more background, the reason we ask donors to provide information about their racial and ethnic ancestry (including multiple races), is that when a patient’s search uncovers several donors who look like they might be a match, our search experts may look at the possible donors’ racial backgrounds to help determine which donor might be more likely to match at a detailed level. This information can help identify the best match for a patient more quickly and efficiently.
    Does that help?

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