Best-selling novels, like Jodi Picoult’s My Sister’s Keeper, tell of the strain this real-life drama takes on a family. Strain between the mother and father (and the husband and wife) as they struggle daily with the real needs of a chronically-ill child who lives daily in the shadow of death. And then there’s the strain that exists between the siblings, as they come to realize their unique and very unusual relationship. One child lives only because another one needed him to be born. The child feels like a means to someone else’s end, because they are in fact, a means to an end.
This latest real-life story addresses the plight of a little girl, Catherine, who has been diagnosed with Diamond Blackfan Anemia (DBA). Children with DBA have a genetic abnormality which causes them to not produce red blood cells. And since we can’t live without red blood cells, children with DBA require frequent and regular blood transfusions over their lifespan. Catherine’s parents had a second child, the natural way, but that child was not a genetic match. As time went by, they had another child, using pre-natal genetic diagnosis (PGD) for the purpose of tissue typing. They made a savior sibling, Mackenzie. When Mackenzie was born, her cord blood was collected, but unfortunately, the sample size was too small and didn’t afford enough cells for a stem cell transplant.
So what can be done ethically? Moving forward, we now have the technology and ability to collect and bank cord blood stem cells and begin building a bank of diverse tissue type cord blood samples for treatment uses. Currently, in the U.S., only about 3% of babies born in the U.S. have their cord blood banked and the majority of this is banking is private ﾖ paid for by the parents. But this practice needs to change and more cord blood needs to be collected and stored in public banks.
Thankfully, our federal government passed the Stem Cell Therapeutic and Research Act of 2005 (H.R. 2520) which provides for “the collection and maintenance of human cord blood stem cells for the treatment of patients and research.” And also funding has been provided by the federal government for the National Cord Blood Stem Cell Bank whose purpose is “to provide funds to a network of cord blood banks to: (1) build a racially diverse inventory of the highest quality cord blood units for transplantation (P.L 109-129 establishes a target of 150,000 new units), and (2) make these and other units at participating cord blood banks available to physicians and patients for blood stem cell transplants through the C.W. Bill Young Cell Transplantation Program. The Program also will make cord blood units available for preclinical and clinical research, focusing on cord blood stem cell biology and the use of cord blood stem cells for human transplantation and cellular therapies.”
And we’re doing our part at the CBC by planning a Spring 2009 conference around the theme of “Banking on Life,” that will bring together leaders and experts in the field of cord blood stem cell research and regenerative medicine developments, which will be available to help real patients in real need.
Speakers confirmed to date:
Dr. Colin McGuckin, professor of Regenerative Medicine, Newcastle University, U.K.
Dr. Bertram Lubin, President and Director of Medical Research at Children’s Hospital Research Institute in Oakland, CA
David T. Harris Ph.D., Scientific Director, Cord Blood Registry, Tucson, Arizona
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