Between the trash can and the freezer: donor education and the fate of cord blood

As Albert Camus put it, life is the sum of all our choices. This statement rings particularly true when we think about the decision a pregnant woman makes regarding the cord blood of her newborn. Only 15 years ago, virtually all women living in the United States had no choice for cord blood other than the trash can. Now, in 2010, the spectrum of choices for women has widened to include both public cord blood donation and private preservation options.

Hematopoietic stem cell transplantation (HSCT) has recently celebrated its 50th anniversary. The first HSCT using related donor cord blood was performed in 1988 followed by the first unrelated cord blood HSCT in 1992.^1,2 Cord blood is now recognized by the medical profession as a viable alternative to marrow and peripheral blood stem cells as a graft source.

The first taxpayer-funded public cord blood banks in the United States were established in 1992. However, it has taken an act of Congress to give the field of public cord blood banking a much-needed impetus. The Stem Cell Therapeutic and Research Act of 2005 (Stem Cell Act of 2005) included the creation of a National Cord Blood Inventory with the goal of collection and storage of 150,000 new high-quality cord blood units (CBUs) from a genetically diverse population. The National Marrow Donor Program, recently rebranded as “Be the Match,” serves as the cord blood coordinating center contractor. As of 2009, more than 160,000 CBUs were available through the Be the Match Registry with almost 23,000 of these units added in 2009 from the National Cord Blood Inventory.^3,4

As an alternative to public donation, families may select to store cord blood in a private bank for future use by the child or the family (i.e., private preservation). The first private cord blood bank in the United States was established in 1992 and it is estimated that more than 700,000 CBUs are presently stored in the private cord blood banks in the United States with the largest private bank claiming an inventory of more than 325,000 units.⁵

There are clear differences between the two cord blood storage options. The for-profit business model of private cord blood banks requires a continuous flow of new customers. There are also concerns regarding the quality of CBUs stored in private versus public cord blood banks. A recent report by Sun and coworkers⁶ in TRANSFUSION from a pilot study concluded that the quality variables of privately banked CBUs were inferior to those stored in public banks.

It is difficult and possibly confusing for expectant mothers to select among the various cord blood options. They are presented with multiple sources of information including governmental (e.g., http://bloodcell.transplant.hrsa.gov), not for profit (e.g., http://www.marrow.org; http://parentsguidecordblood.org), and solicitations from individual cord blood banks, both public and private. Although the plethora of resources may increase the public awareness of cord blood banking, the available resources do not necessarily increase the knowledge base and understanding of the possible choices.

This lack of knowledge regarding cord blood donation continues to be a barrier to efforts to expand the cord blood donor pool. Multiple previous studies using surveys and focus groups have demonstrated that pregnant women have poor knowledge of cord blood donation and the illnesses for which cord blood may be used.^7,8 Knowledge of cord blood banking has previously been shown to correlate with level of education with highly educated women having increased awareness.^9,10 Surveyed pregnant women have expressed a desire for more education and would prefer to receive this education from health care professionals before delivery.^11,12 Improvement of donor education is one of the primary objectives of the Stem Cell Act of 2005.

In the article published in this issue of TRANSFUSION, Shin and coworkers¹³ surveyed educated Korean women voluntarily attending a maternity education program regarding their knowledge of cord blood donation. These women likely represent those most motivated to learn about cord blood donation based on their participation in the maternity education program and those most likely well equipped to make an informed decision based on their high level of education. Among these women, the primary sources of information about cord blood donation were the media or Internet, followed by brochures from the public cord blood bank, associates, and private cord blood banking advertisements. In this study, very few women reported obtaining information from their obstetricians. Although health care providers are a good source for current and medically accurate information about cord blood donation, this study illustrates that highly educated women who are motivated to learn about cord blood donation are getting their information elsewhere.

This study demonstrates that among the subset of highly educated women in Korea who frequently donate cord blood and who have some previous knowledge of cord blood donation, many are often unequipped to make a decision regarding cord blood donation in spite of access to information from multiple sources. While this finding is troubling, it remains unclear as to what constitutes a reasonable level of knowledge regarding cord blood donation. Shin and coworkers attempted to ascertain whether pregnant women accurately understand which disorders are currently treated by cord blood transplantation and included disorders such as Alzheimer's disease, diabetes mellitus, and Parkinson's disease. One could argue that most physicians not directly involved in transplantation may have difficulty answering such questions from their patients correctly.

While this degree of knowledge may be unrealistic, pregnant women should be able to make an informed decision, particularly when they are asked to choose between various options including public, private, or no donation. In this study, those who decided to donate to the public cord blood bank often cited altruism as the reason behind their decision while those who opted to participate in private cord blood banking did so most often because they believed that a family member may need bone marrow transplantation in the future or because they believed that cord blood from their family is safer. Based on these responses, it is clear that pregnant women would benefit from additional education regarding cord blood donation during their pregnancy and obstetricians could play a more significant role in providing this education.

The authors of this study recognize that their study design significantly limits the generalizability of their results. The studied population was self-selected and included only those women who sought prenatal education. These women were highly educated and potentially more Internet savvy. The survey was also constructed from the perspective of the public cord blood bank, which introduces a bias, even if unintended, that public cord blood banking is the right model for cord blood donation.

The problem of educating expectant mothers is not limited to South Korea and has been recognized as an important issue by the Advisory Council on Blood Stem Cell Transplantation of the U.S. Department of Health and Human Services. During their May 2010 meeting the Advisory Council was presented with suggestions for increasing the awareness of the potential donors. One suggestion was to include appropriate information in an existing federally funded document, the Pregnancy Passport.¹⁴ Eighteen states have also recently passed legislation intended to provide information to expectant mothers regarding options for cord blood banking with some statutes crafted under the influence of lobbyists for private cord blood banks.¹⁴ Finally, the use of social networking applications such as Facebook or Twitter has already changed how young women access information and educate themselves. The impact of the information disseminated though these channels on the formation of opinions about cord blood banking cannot be underestimated.

The reader of the article by Shin and colleagues in this issue ofTRANSFUSION may wonder how many CBUs were actually collected from this preselected group of survey respondents in this study. . . . We hope the answer is many.

CONFLICT OF INTEREST

None.