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Protecting Expecting Parents from Misinformation
CHORI Scientists Present New Data on Counseling Practices for Cord Blood Banking

"Just like with any other public health matter, it's important that your physician is informed and can answer your questions in a way that isn't biased by commercial companies."

CHORI president, Bertram Lubin, MD, and Amanda Yeaton-Massey just presented a poster titled “To Bank or Not to Bank: A National Survey of Pediatricians’ Counseling Practices” at the Pediatric Academic Societies Annual Meeting in Baltimore, MD. The presentation was based on a national survey through the American Academy of Pediatrics, which showed that in spite of new recommendations published by the American Academy of Pediatrics, most physicians are still woefully unprepared to discuss the potential benefits or drawbacks of umbilical cord blood banking with expecting parents.

Umbilical cord blood has been shown to be a viable source of stem cells for transplantation of children with leukemia, sickle cell anemia and other disorders. Traditional transplantation approaches utilize stem cells from bone marrow, and require the donor's human leukocyte antigen (HLA) cells to match the recipient's HLA cells, limiting the number of people who can identify a donor and receive a transplant for their life-threatening conditions. With stem cells from umbilical cord, however, exact HLA matching isn't required, making the public banking of umbilical cord blood and their availability to all children in need highly advantageous.

"Public cord blood collection benefits everyone in the world. If you need a donor you have a good chance of finding one because you don't need a perfect HLA match," says Dr. Lubin.

Freedom from needing a perfect HLA match is particularly important for minorities. In African Americans, for example, the HLA type is extremely diverse, making it that much harder to find a perfect match.

As Dr. Lubin points out, "Public cord blood banking is a way to answer the demand for the 10 thousand people a year waiting to find a donor."

Unfortunately, many expecting parents know very little about the value and rationale for cord blood banking. A variety of sources contribute to misinformation, including publications and marketing from private cord blood banks that stand to gain financially from convincing parents to bank cord blood with them. Just two years ago, the American Academy of Pediatricians attempted to address this gap in public knowledge by publishing new recommendations for physicians, who would be able to share this information with the patients and families. The lead author of the recommendations, Dr. Lubin was a member of a team that conducted a survey among Pediatricians in order to find out whether or not the recommendations had made a difference.
"What we found out is that most physicians still don't really know about the value of cord blood banking or how to counsel a family, and our recommend-ations haven't had an impact," says Dr. Lubin.
"It was quite disappointing, which is why we decided to submit an abstract, which was accepted for a poster presentation, to the Annual Meeting of the Pediatric Academic Society," says Dr. Lubin.

"The whole idea behind the poster presentation and the recommendations is that we want as many physicians as possible to be informed, so that when parents ask the questions, their doctors can answer them."

While there are very few public cord blood banks in the United States and none in the Bay area, the fear is that expecting parents with questions about cord blood banking may fall prey to marketing practices of private companies.

"There is not scientific evidence to support the statement made by private companies that banking cord blood now could help the current child in the future. If you bank the cord blood from a child who later develops leukemia, for example, most transplant physicians will not use that cord blood as it is likely to have the same genetic make-up that caused the leukemia," explains Dr. Lubin.
"The information conveyed by many private cord blood programs could cause parents with limited resources to spend money on something that really holds no value for their child."

In addition to the poster presentation, the survey findings will be published in the hopes that the physician community will disseminate the American Academy of Pediatrics' recommendations on umbilical cord blood banking.

"Ideally, we'd like to see public cord blood banking available to everyone," says Dr. Lubin. "But for now, the most important thing is for physicians to be able to council expecting parents with accurate, unbiased information so that they can make appropriate choices."

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Tuesday, May 17, 2011 8:19 AM

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