Public or Private Cord Blood Banking – an important decision.
Public or Private Cord Blood Banking – an important decision. Feb 2013
We started taking birthing classes with our hospital about half way through our pregnancy. In several of our classes questions on the topic of cord blood banking came up. It was clear that there were several things we needed to understand to make an informed decision; primarily ethical, religious, financial, and medical.
A key understanding is that there are different kinds of stem cells. The focus of this article is about cord blood stem cells. Although there is controversy on the topic of embryonic stem cell research, there is little controversy over cord blood stem cells and cord blood banking, as the cord and its blood are part of our bodies, and taking the stem cells from the cord that would otherwise be discarded after birth in no way harms the baby or mother.
With regard to religion, there are several that take issue with embryonic stem cell research, but few if any that oppose cord blood stem cell research. (Bishops). This finding answered our question on where our faith stood, and a visit with your religious leader or a search on your religion and its position on the various types of stem cell research should answer any questions you have.
Current research with cord blood stem cells show promise in the treatment of: AIDS, Alzheimer’s Disease, Diabetes, Heart Disease, Liver Disease, Muscular Dystrophy, Parkinson’s Disease, Spinal Cord Injury, and Stroke.
Diseases that have already been treated with cord blood stem cells include: Acute Lymphoblastic Leukemia, Acute Myelogenous Leukemia, Acute Promyelocytic Leukemia, Adrenoleukodystrophy, Alpha Mannosidosis, alpha-Thalassemia HbH constant spring, Amegakaryocy, Anaplastic Lymphoma, Aplasia, Aplastic Anemia, Biphenotypic Leukemia, Burkitt’s Lymphoma, Chediak-Higashi Syndrome, Chronic Granulomatous Disease, Chronic Lymphocytic Leukemia, Chronic Myelogenous Leukemia, Congenital Neutropenia, Di¬use Large B-Cell Lymphoma, Dyskeratosis Congenita, Familial Lymphohistiocytosis, Fanconi Anemia, Hemophagocytic Lymphohistiocytosis, Histiocytosis, Hodgkin’s Disease, Hunter’s Syndrome, Hurler’s Syndrome, Hyper IgM Syndrome, I Cell Disease (Leroy Disease), Juvenile Myeloid Leukemia, Juvenile Myelomonocytic Leukemia, Kostmann Syndrome, Krabbe Disease, Langerhans Cell Histiocytosis, Leukodystrophy, Mantle Cell Lymphoma, Mycosis Fungoides, Myelodysplastic Disorder, Myelofibrosis, Neuroblastoma, Niemann-Pick Disease, Non-Hodgkins Lymphoma, Osteopetrosis, Plasmocyte Leukemia, Polycythemia Vera, Refractory Anemia, Sandhoff Disease, Scleroderma, Severe Combined Immune Deficiency (SCID), Sickle Cell Disease, T-Cell Immunodeficiency, Thalassemia, and Wiskott Aldrich Syndrome. Additional changes to the list above and updates can be viewed at the source listed here: http://www.stemcyte.com/scf-diseases-treated
Considering the value and potential of cord blood stem cell research and goals, it became clear that of the three options; 1) discard the umbilical cord blood, 2) private cord blood banking, 3) public cord blood banking, we would want the cord blood used for something rather than be discarded. Now we were down to public or private cord blood banking. The remaining questions were; what were the differences between the two in terms of access to it for personal use, and, the difference in cost?
The primary differences between public and private cord blood banking are access and cost. With public cord blood banking you don’t pay for anything, but there is no guarantee that your cord blood will be available to you if you need it in the future. Your cord blood stem cells are listed in a national registry, and if there is a patient being treated and the cord blood you donated is a good match, it may be used to treat that person. However, if you come down with a treatable illness and your cord blood has not been used, it is still available to you to use to treat your illness.
With private cord blood banking, you pay a fee to guarantee access to your sample of cord blood if you or a family member is diagnosed with a disease that is treatable with your cord blood, you have access to it.
Deciding between public or private cord blood banking should include a look at both parents family medical histories to determine if there are any diseases that are prevalent in your family. Then compare any diseases you find with those that are treatable with cord blood cells. This should give you a strong indication of the likelihood of needing access to your specific sample in the future, and help you decide whether the risk is worth the cost.
As of Feb, 2010, a public cord blood donation is free, while a donation to a private company is roughly $1,500.00 with an additional annual frozen storage maintenance fee of $75.00 per year.
Additional considerations include;
1) Make this decision and contact the group you would like to donate to by the 30th week of your pregnancy because you need to have a kit sent to your house and fill out some paperwork with regard to your background. This is especially true if you want to do a public cord blood banking because there are more questions about family history of disease that need to be understood in order to have your cord blood listed in the national registry. Beyond 30 weeks you really only have the private cord blood option.
2) For public cord blood banking, the hospital will have to take more blood samples at birth in order to list your blood in the national registry whereas there may only be one blood sample taken for a private banking.
3) As for the cord blood extraction itself, the doctors explained that there was little difference in what they were asked to do.
4) With public cord blood banking, after the baby is born you (or someone you designate) will be responsible for shipping the sample back to the research institution in a timely manner using a prepaid container that is sent to you. With private cord blood banking, there may be someone that picks up the sample after birth and ships it to the storage facility. In our case, it was a Federal Express prepaid sticker on a red sample storage container that we took to a local Federal Express office that was suited to accept these shipments. Further conversations with Federal Express personnel indicated that a truck goes to our hospital every day except Sunday, and that those packages can be put on those trucks. So check with your hospital beforehand, it might save you from having to leave your new bundle of joy for a while to deliver the sample.
After taking into consideration the risks, costs, and benefit to society, our decision was to donate our cord blood to a public cord blood bank. We found lists of public and private cord blood banking locations, and ultimately chose to use the Carolinas Cord Blood Bank – http://www.cancer.duke.edu/ccbb/contribute.asp to give our cord blood donation to.
In closing, we hope to raise awareness of these two options, and would like to encourage all couples to choose either private or public cord banking over discarding the cord blood. Please share this information with family and friends to help raise awareness of this choice. There is simply a lot of good that it can be used for in developing and treating illness, now and in the future.
Cord Blood – Wikipedia 15 Feb 2013, http://en.wikipedia.org/wiki/Cord_blood
Stem Cell – Wikipedia 15 Feb 2013, http://en.wikipedia.org/wiki/Stem_cell
Carolinas Cord Blood Bank http://www.cancer.duke.edu/ccbb/contribute.asp
Bishops, United States Conference of Catholic. Catholic Support for Ethically Acceptable Stem Cell Research. 9 February 2013. 9 February 2013.
More information can be found:
Carolinas Cord Blood Bank http://www.cancer.duke.edu/ccbb/contribute.asp
Additional articles http://www.cancer.duke.edu/ccbb/articles.asp
Cord blood stem cells http://en.wikipedia.org/wiki/Cord_blood