Bone Marrow Donation: Registry, Procedures, and Ethics

Introduction to Be the Match and Bone Marrow Donation

Be the Match is the central bone marrow donation registry for the United States, operated by the National Bone Marrow Donor Program. Through the organization's website and outreach programs, people can register to become potential bone marrow donors. Be the Match is a non-profit organization that works with doctors, patients, and donors to help match recipients. It does not provide compensation to donors and does not require payment from patients in order to provide matches. Becoming a potential donor registered with Be the Match is a straightforward process that requires little initial commitment, though any person signing up as a potential donor should be prepared for a high level of commitment if chosen as a match for a patient.

History and Types of Bone Marrow Transplants

Bone marrow transplants can be used to treat a variety of different medical conditions, and the concept of marrow donation has been around for well over 100 years. For example, in the late 1800s, patients received bone marrow orally in order to treat blood disorders (Armitage, 1994). This oral use of bone marrow was not successful, but it did reveal a growing awareness that marrow could be used to help treat blood and marrow disorders. This scientific knowledge grew so that, as early as the 1930s, doctors were beginning to experiment with the injection of bone marrow from donors into recipients. The field has expanded greatly in the last few decades, with bone marrow transplants offering significant medical options to people with a variety of diseases.

When discussing bone marrow donation, it is important to recognize that there are two broad types of bone marrow transplants: autologous and allogenic. Autologous transplants are those in which a patient donates marrow to himself or herself, and therefore do not require an outside donor. These types of transplants have been successful in the treatment of lymphoma (Armitage, 1994). Allogenic transplants, by contrast, occur when one person donates bone marrow to another person. Several sources of stem cells can be used in allogenic transplants: a synegenic donor refers to an identical twin; other sources include human leucocyte antigen (HLA) matched siblings or family members, HLA-matched unrelated donors, HLA antigen-mismatched donors, haploidentical donors (HLA haplotype matched), and umbilical cord blood donors (Clark & Craddock, 2007).

While siblings provide the best opportunity for a bone marrow match, the reality is that most people in need of allogenic marrow donations do not have a sibling who will match them. Therefore, bone marrow registries are a critically important mechanism for matching recipients with suitable donors.

Diseases Treatable by Bone Marrow Transplant

Bone marrow donations can be used to treat a variety of diseases and, in some circumstances, may offer the only cure for patients with certain conditions. Several types of leukemias and lymphomas are treatable by bone marrow transplant and can even be cured by the procedure (National Marrow Donor Program, 2013, Diseases). Transplants can also be used to treat a variety of bone marrow and blood-related diseases, including severe aplastic anemia, Fanconi anemia, paroxysmal nocturnal hemoglobinuria, pure red cell aplasia, and amegakaryocytosis/congenital thrombocytopenia (National Marrow Donor Program, 2013, Diseases).

Bone marrow transplants may also be used to combat inherited immune system disorders such as all types of severe combined immunodeficiency (SCID) and Wiskott-Aldrich syndrome (National Marrow Donor Program, 2013, Diseases). They may further treat diseases that affect red blood cell function (hemoglobinopathies), such as beta thalassemia major, sickle cell disease, Krabbe disease (GLD), Hurler syndrome, adrenoleukodystrophy (ALD), metachromatic leukodystrophy (MLD), myelodysplastic syndromes, and myeloproliferative disorders (National Marrow Donor Program, 2013, Diseases). Bone marrow transplants have additionally been used to treat multiple myeloma, plasma cell disorder, familial erythrophagocytic lymphohistiocytosis and other histiocytic disorders, and other cancers and malignancies (National Marrow Donor Program, 2013, Diseases).

In many instances, patients and family members face a difficult situation: knowing that a bone marrow transplant is needed but having no available matched donor. This reality has led individuals to actively educate others about bone marrow donation and to urge people to sign up and be tested for the registry (Attwood, 2004). Be the Match and the National Marrow Donor Program aim to reduce the likelihood that a person who could be saved by a bone marrow donation will die due to a lack of an available matched donor.

The Donation Process: Procedures and Risks

Becoming a bone marrow donor is one way a person can potentially save the life of another. The process itself is relatively straightforward. A bone marrow transplant involves taking healthy blood-forming cells — either directly from a donor's marrow or from their bloodstream — and placing them in the bloodstream of a patient. Once transplanted, these cells form healthy blood components: red blood cells, white blood cells, and platelets. "Patients receive high doses of chemotherapy to prepare their body for the transplant. Then on transplant day, the patient receives the donated cells in a process that is like getting blood or medicine through an intravenous (IV) catheter, or tube" (National Marrow Donor Program, 2013, How bone).

Registering as a potential donor is also a simple process. Through a cheek swab, a potential donor can have his or her bone marrow information stored in the national registry. When a potential recipient's needs match an entry in the registry, the preliminary match receives further compatibility testing and a transplant is arranged. Of the volunteers in the national donor registry, approximately 1 in 540 is eventually chosen to become a donor (National Marrow Donor Program, 2013, FAQs). If selected, the donor typically commits 30 to 40 hours over an approximately four-to-six-week period to attend appointments and provide the donation (National Marrow Donor Program, 2013, FAQs).

The donation process itself depends on what type of bone marrow procedure is performed. Donors may contribute through either peripheral blood stem cell (PBSC) donation or through traditional bone marrow donation; PBSC donation is the less painful and less time-consuming of the two. "Peripheral blood cell (PBSC) donation involves removing a donor's blood through a needle in one arm. The blood is passed through a machine that separates out the cells used in transplants. The remaining blood is returned through the other arm" (National Marrow Donor Program, 2013, FAQs).

For PBSC donation, the donor receives granulocyte-colony stimulating factor (G-CSF) in order to raise the peripheral blood white cell count (Clark & Craddock, 2007). High-dose G-CSF not only raises the peripheral white blood cell count, but also causes CD34+ stem cells to migrate from the marrow into the blood (Clark & Craddock, 2007). After four or five days, the donor then undergoes a leukapheresis procedure to collect white blood cells and CD34+ stem cells from the blood (Clark & Craddock, 2007). This procedure is much easier on both the donor and the recipient than traditional bone marrow donation. "Compared with bone marrow as a graft, peripheral blood stem cells (PBSCs) provide faster blood count recovery and better immune reconstitution post-transplant. PBSC collection is a day-case procedure, which avoids anaesthesia and there is no evidence of long-term effects from G-CSF administration to healthy volunteer donors" (Clark & Craddock, 2007). Donors may experience some side effects, including myalgia, bone pain, and headache (Clark & Craddock, 2007). In addition, if PBSC does not yield sufficient marrow cells, the donor may need to have their marrow harvested through traditional techniques (Clark & Craddock, 2007).

Donating actual bone marrow is a more complex process and involves a higher commitment. Traditional bone marrow donation is a surgical procedure and therefore carries some risks for the donor. During the procedure, liquid marrow is extracted from the back of the donor's pelvic bones using a needle. The donor is anesthetized during the extraction, though "most donors feel some pain in their lower back for a few days afterwards" (National Marrow Donor Program, 2013, FAQs).

References

Armitage, J. O. (1994). Bone marrow transplantation. The New England Journal of Medicine, 330(12), 827–38.

Attwood, K. (2004). Plea for marrow donors: First edition. The Independent, 22. Print.

Bone marrow wait over: Final edition. (1999). The Independent, 5. Print.

Clark, F., & Craddock, C. (2007). Chapter 12: Stem cell transplantation. In D. Povan (Ed.), ABC of clinical haematology (3rd ed., pp. 67–71). Malden, MA: Blackwell Publishing Ltd.

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National Marrow Donor Program. (2013). Diseases treatable by transplants. Retrieved November 26, 2013, from Be the Match website:

National Marrow Donor Program. (2013). FAQs about joining. Retrieved November 26, 2013, from Be the Match website: http://bethematch.org/Support-the-Cause/Donate-bone-marrow/Join-the-marrow-registry/FAQs-about-joining/

National Marrow Donor Program. (2013). How bone marrow transplants work. Retrieved November 26, 2013, from Be the Match website:

Neergaard, L. (2013, November 17). Gov't to keep ban on paying bone marrow donors. Retrieved November 28, 2013, from ABC News website:

Park, A. (2012, July 2). A court allows payment for bone marrow. Should people be able to sell their parts? Retrieved November 28, 2013, from Time Magazine website:

Rubin, R. (2010). A bone marrow price tag?: Lawsuit argues that lives would be saved if donors were compensated. USA Today, B.7. Print.