Why many would-be bone marrow, blood stem cell donors back out
Donating bone marrow is a very low-risk procedure, with only 1.3% of donors experiencing complications.
January 9th, 2013
11:37 AM ET

Why many would-be bone marrow, blood stem cell donors back out

Upon being identified as potential bone marrow or blood stem cell donors, many people choose not to participate. As result, patients with blood cancers go without life-saving treatments.

About 40% of whites and 60% of nonwhites are no longer available for whatever reason to donate when contacted for confirmatory testing by blood sample, according to data from the National Marrow Donor Program and Be The Match. Surveys from Be The Match also suggest that about 10-23% of donors are unavailable specifically because they choose to opt out.  Why? That's the question researchers attempted to answer in a recent study.

"The most consistent factor associated with opting-out of the registry across all race/ethnic groups was ambivalence about donation - doubts and worries, feeling unsure about donation, wishing someone else would donate in one's place," writes Galen Switzer, a professor of medicine and psychiatry at the University of Pittsburgh, in the study, published in December in the journal Blood.

 "We wanted to know what might explain the higher rates at which ethnic minorities opt out of the registry when they're contacted as a potential match," says Switzer, the lead study author.

"Some of the ethnic groups had less trust that the stem cells that were collected would be allocated equitably. Members of ethnic minorities groups were also more likely to have been discouraged by someone else from donating."

For example, in phone interviews, minorities were more likely to disagree with the statement: "Stem cells go to the person who needs them most regardless of their race."

To increase would-be donor participation among all groups, the study authors suggest screening potential donors for "ambivalence", and then addressing more of the ambivalent donors' concerns head-on before they opt out unnecessarily.

"The ultimate goal in mitigating doubts and worries about donating," says Switzer, "is to ensure that potential donors are fully educated, confident, and most importantly, comfortable with their decision, no matter what choice they make."

More: Why I donated my bone marrow

soundoff (24 Responses)
  1. Misty G

    when i ask most of my family. They say they heard its painful. My son has Aplastic Amenia with no sibling match.He has had 3 bone marrow aspirations and i signed up right away to be a donor. I Pray that if he needs a transplant someone out there is his match. I would love to pay it forward to someone who needs it too. Praying for People to become donors and go through with it if called.

    January 9, 2013 at 14:52 | Report abuse | Reply
    • GingerR

      IIt's much worse to be the sick person. When they do a bone marrow biopsy on the sick person it does hurt.

      Donors get a better deal, they get anesthesia. My son donated and the most annoying thing for him was that the procedure was delayed and he had to cancel his date for the evening.

      January 11, 2013 at 13:56 | Report abuse |
  2. empresstrudy

    So black people think it's a conspiracy? Uh ok.

    January 9, 2013 at 15:50 | Report abuse | Reply
    • frederick

      Yep. Discrimination. Blacks don't want their donation to go to a non-black. Period.

      January 10, 2013 at 15:29 | Report abuse |
    • OsayaE

      First off is like to start by staying that's very mean and wrong for you state that. I am donating in about a month found out I was a match about three weeks ago. I've been told by my parents and others not to do it out of fear. I am not scared not to mention this is an amazing gift especially since I'm actually donating two days before Christmas. My ethnicity is Nigerian born here in America. Not all black people are closed minded and I honestly don't care who the recipient is as long as I fulfilled my part I'll be happy. The fact that would single out "black people" from minorities is wrong minorities include many other races other than white, so what made you choose blacks as the major minority to target? Seems like your intent is Ill placed and you may need to reevaluate your outlook on life

      November 14, 2013 at 15:07 | Report abuse |
  3. InMyHappyPlace

    We are so paranoid because of all the restrictions for donors that most people fear finding out why they would be rejected. I am gay, and take medication for out of balance triglycerides. Both of these disqualify me. We can't beat HIV, only put it in check. Yet if a person that is at risk for contracting HIV attempts to donate, they are turned away. Would it not be better to make the blood of an HIV positive person available for research? The problem with Americas health care system today is that we are too afraid to be adventurous anymore. Everything has to be so safe and so sanitary that nobody is willing to take the chance, even if it means saving a life.

    January 9, 2013 at 20:33 | Report abuse | Reply
    • Joan

      I don't really think people feel comfortable taking a "risk" on someone who is HIV Positive. You are pretty much guaranteeing that person they will also get HIV. Also, when you are getting a bone marrow transplant you have to take medication to suppress your immune system to allow the donor's cells to be accepted. That plus and HIV positive donor equals certain and quick death.

      January 10, 2013 at 14:57 | Report abuse |
    • cbtx67

      I agree, while I don't have HIV, I do have other conditions that forgoe volunteering. My thyroid issues and reactive airway did me in as a donor...You would think there would be a way to cleanse the marrow, much like blood, them donate.

      January 10, 2013 at 15:58 | Report abuse |
  4. InMyHappyPlace

    Oh yeah. The less than fortunate are tired of hearing about the rich and famous getting rare donor organs. So why would the less fortunate care to donate to someone that has had more than them all their lives?

    January 9, 2013 at 20:36 | Report abuse | Reply
    • Rayna

      The 'less fortunate' are also recipients. I have a close friend whose 4 year old was diagnosed with Aplastic Anemia and needed to have a bone marrow transfusion. Thankfully, they were able to find a match for him and it was successful. He's now 6, and so far still doing well. They are beyond grateful that the unknown donor committed to doing it. It isn't just the rich and famous that sometimes need this, it's us completely average people too.

      January 23, 2013 at 18:45 | Report abuse |
  5. Else

    In the article they state that the most "consistent" basis for opting out is ambivalence but they do not give the actual statistics. Just because the most common reoccurring answer is ambivalence doesn't mean anything if the total of all the OTHER answers is more than the most common answer (if they asked 100 people and 10 people said ambivalence but 90 people gave unique answers then only 10% don't donate because of ambivalence but 90% don't donate for some other reason, meaning that ambivalence as the discussion topic is POINTLESS because MOST people don't not donate because of ambivalence )

    The article is almost worthless as written

    January 9, 2013 at 21:06 | Report abuse | Reply
  6. Portland tony

    If it were for a family member...without a doubt. For anybody else, pay me a reasonable amount for pain, lost time etc...and I will "donate" my friggin' brain if it will save a life! Sounds heartless, but at least they'd get what they needed!

    January 9, 2013 at 21:56 | Report abuse | Reply
  7. badger_doc

    Maybe if they allowed overweight donors to become a match, there would be more options available. I went on the Be A Match website because I wanted to help those who had these types of cancer, but I found out I would be rejected because I am overweight. Overall, I am a healthy 28 year old with no other riskfactors other than weight. Who cares? Seriously... Most of America is overweight and they undergo surgical procedures all the time. Isn't it my choice to donate? Why does weight have to be an issue. Just to clarify, I'm not like 400 lbs where it might be lifethreatening to go under anesthesia.

    January 10, 2013 at 10:17 | Report abuse | Reply
    • A

      Donors over a certain weight are deferred from donating or joining the registry because both donation methods, Peripheral Blood Stem Cell (PBSC) and Marrow, require administering drugs. The amount of drug administered is calculated based on the donor's weight. If the donor's weight is over a certain amount then the amount of drug that would be required is considered unsafe and potentially dangerous for the donor. Hence the weight restriction.

      September 16, 2013 at 19:25 | Report abuse |
  8. Stephanie Arizona

    Part of me wishes I could donate, but a severe fear of needles and anesthesia has always kept me from trying. I have also been told by non-medical sources that because I have had MRSA (sp?) serveral times that I would not be aloud to donate if I tried. I wonder if this is true, but the internet searches have been mixed and I rarely see doctors and have yet had a chance to ask.

    January 10, 2013 at 12:09 | Report abuse | Reply
    • Joan

      Having had MRSA (Methicillin-Resistant Staphylococcus aureus) will not prevent you from donating.

      January 10, 2013 at 15:03 | Report abuse |
  9. GingerR

    IBeing a bone marrow donor isn't painful.

    The initial testing involves a blood test. That's no different than a regular check-up. You stick your arm out and they get the blood. If you turn your head the other way you hardly know they're doing it.

    If you qualify to donate marrow it's done under anesthesia. You breath some happy gas and when you wake up it's over.

    My son donated to his father. The first night after the donation he was groggy. The second night I don't know how he was because he went out partying with his friends and I didn't see him. Didn't seem like it was a problem!

    Save a life!

    January 11, 2013 at 13:54 | Report abuse | Reply
  10. Elle

    If they want more donors, pay them. Period. It sure is cheaper in the long run. If people can sell their eggs-even their hair-then why not marrow. The Red Cross sells collected blood, and it isn't even theirs! So why not.

    January 13, 2013 at 06:51 | Report abuse | Reply
    • Seashell45

      who should pay? hope you never need a transplant?

      November 1, 2013 at 22:49 | Report abuse |
  11. JD

    Unrelated Bone Marrow Donation is a beautiful gift to society and transcends borders of worldwide countries. This article is about why individuals who have registered to donate back out after they have been matched with a patient. Living organ donation is not for everybody, including those who have other health factors that may make it too much of a risk for their personal safety, as well as the sick individual who to receive a donors new marrow. This is not about paying people. If you are not committed to making the sacrifice of your personal time, emotional impact and some physical discomfort, then you are better off not registering to provide marrow to someone unrelated to you. If you do believe you can offer this to society, with no payoff other than knowing you can safe a life and be a hero to those connected to the sick, than you need to stay committed to do it when you are asked and a patient on their way to imminent death knows they have a matching person out there. Thank you to all that have accepted that offer of their selflessness.

    January 14, 2013 at 15:49 | Report abuse | Reply
    • Anonymous

      Very well stated!

      February 5, 2013 at 17:12 | Report abuse |
  12. Paul

    I became a donor yesterday got two infant siblings. I will probably never get to meet the babies or their families since they are international and I live in the US but it's an amazing feeling to know that I can potentially help save their lives. I URGE all to register!

    February 13, 2013 at 18:58 | Report abuse | Reply
  13. Paul

    For* two infant siblings

    February 13, 2013 at 18:59 | Report abuse | Reply
  14. Dr David Greene MD

    Individuals are doing good work, no matter what the reason still their work is good.
    Dr. David Greene

    October 24, 2019 at 03:45 | Report abuse | Reply

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