www.flickr.com/photos/lovemybunnies/4740682244/

I was recently asked my thoughts on private cord blood banking by a couple expecting their first child. This was something that they were considering and wanted to know what information was out there. I had read various articles and commentaries on private cord blood banking in recent years, but I viewed this as an opportunity to refresh my knowledge before I provided an answer to them. I wanted to share this information with Science & Sensibility readers, so that you may use it with your classes, clients and patients as well, if you wish.

Kimmelin Hull wrote a very comprehensive post on Science and Sensibility in April, 2011, discussing 'Should we, or should we not retrieve Umbilical Cord blood at all?' along with providing information on delayed cord clamping current research, and referring readers to a fantastic Journal of Perinatal Education article, Umbilical Cord Blood: Information for Childbirth Educators, written by Renece Waller-Wise, MSN, CNS, CLC, CNL, LCCE. Kimmelin Hull's post and Renece Waller-Wise's JPE article were great places for me to start my exploration to be able to answer this couple.

Today's post is not about the benefits and/or risks of delayed cord clamping. Information on that topic has been provided previously on this site. What I was really looking for was more information on the likelihood that private banked cord blood might be used for that child or other relatives in the future.

Research indicates that pregnant women frequently do not have adequate information to make an informed decision about cord blood banking. (Fox, et al, 2007). Additionally, the information sources for childbirth birth educators are frequently the private blood banks or their designated representatives, adding in the potential for bias. (Cord Blood Registry, 2009; Wolf, 1998, 1999) Interestingly, in the state of Washington, where I live, the state requires practitioners to provide information on cord blood donation and banking. (but not on delayed clamping.)

Revised Code of Washington (RCW) 70.54.220 All persons licensed or certified by the state of Washington to provide prenatal care or to practice medicine shall provide information to all pregnant women in their care regarding:

(1) The use and availability of prenatal tests; and

(2) Using objective and standardized information: (a) The differences between and potential benefits and risks involved in public and private cord blood banking that is sufficient to allow a pregnant woman to make an informed decision before her third trimester of pregnancy on whether to participate in a private or public cord blood banking program; and (b) the opportunity to donate, to a public cord blood bank, blood and tissue extracted from the placenta and umbilical cord following delivery of a newborn child.

Nationwide, 26 states have legislation on providing cord blood information. This legislation is intended to guide health care providers and inform parents about their options concerning donation and banking. You can access this information on a state by state basis here. In Washington, exactly what information should be provided is not spelled out.

Stem cells are available from a variety of sources, but umbilical cord stem cells are the easiest to collect, collection is painless, and according to studies can be done before or after the placenta is delivered. (Gonzalez-Ryan, VanSyckle, Coyne, & Glover, 2000; Percer, 2009). The stem cells are quickly available to be used. But, according to one study, approximately 50% of all cord blood collection samples contain an insufficient volume of blood. (Drew, 2005).

Private cord blood banking is often marketed as 'biological insurance' for potential problems with that child in the future. 'Autologous transplant' is where the cord blood is given back to the child it was taken from. The chance that a child will need its own cord blood is extremely small; a 1:400 to a 1:200,000 chance over the child's lifetime (Sullivan, 2008). In the case of some illnesses, it would be unwise to transfer the same cord blood cells as they are considered 'contaminated' with the very disease that is hoping to be cured.

There is not a lot of research on the period of time that a collected cord blood sample would be viable after storage, and no research on viability over the course of the average human lifespan.

Private cord blood banking is not without significant expense and cost. Collection and initial processing can run approximately $3000, and then there is an annual fee that can run several hundred dollars for storage each year after that.

Private cord banking services are not regulated, either on the federal level or by the state, so without oversight, regulations and a quality assurance program managed by a third party, consumers may find themselves dealing with programs that could not be financially viable over the long term or may not be handling or storing stem cell products appropriately.

What do various organizations say about private cord blood banking?

American Congress of Obstetricians and Gynecologists (ACOG)

ACOG has a statement on Umbilical Cord Blood Banking and in their recommendations and conclusions they state:

• If a patient requests information on umbilical cord banking, balanced and accurate information regarding the advantages and disadvantages of public versus private umbilical cord blood banking should be provided. The remote chance of an autologous unit being used for a child or a family member (approximately 1 in 2,700 individuals) should be disclosed.
• Discussion may include information regarding maternal infectious disease and genetic testing, the ultimate outcome of use of poor quality units of umbilical cord blood, and a disclosure that demographic data will be maintained on the patient.
• Some states have passed legislation requiring physicians to inform their patients about umbilical cord blood banking options. Clinicians should consult their state medical associations for more information regarding state laws.
• Directed donation of umbilical cord blood should be considered when there is a specific diagnosis of a disease known to be treatable by hematopoietic transplant for an immediate family member.
• Obstetric providers are not obligated to obtain consent for private umbilical cord blood banking.
• The collection should not alter routine practice for the timing of umbilical cord clamping.
• Physicians or other professionals who recruit pregnant women and their families for for-profit umbilical cord blood banking should disclose any financial interests or other potential conflicts of interest.

American Academy of Pediatrics

The American Academy of Pediatrics also has a policy statement out on cord blood banking. Their recommendations are similiar to ACOG.

• Cord blood donation should be discouraged when cord blood stored in a bank is to be directed for later personal or family use, because most conditions that might be helped by cord blood stem cells already exist in the infant's cord blood (ie, premalignant changes in stem cells). Physicians should be aware of the unsubstantiated claims of private cord blood banks made to future parents that promise to insure infants or family members against serious illnesses in the future by use of the stem cells contained in cord blood. Although not standard of care, directed cord blood banking should be encouraged when there is knowledge of a full sibling in the family with a medical condition (malignant or genetic) that could potentially benefit from cord blood transplantation.

• Cord blood donation should be encouraged when the cord blood is stored in a bank for public use. Parents should recognize that genetic (eg, chromosomal abnormalities) and infectious disease testing is performed on the cord blood and that if abnormalities are identified, they will be notified. Parents should also be informed that the cord blood banked in a public program may not be accessible for future private use.

• Because there are no scientific data at the present time to support autologous cord blood banking and given the difficulty of making an accurate estimate of the need for autologous transplantation and the ready availability of allogeneic transplantation, private storage of cord blood as 'biological insurance' should be discouraged. Cord blood banks should comply with national accreditation standards developed by the Foundation for the Accreditation of Cellular Therapy (FACT), the US Food and Drug Administration (FDA), the Federal Trade Commission, and similar state agencies.

Online Resources on Cord Blood Banking to Share with Families

Parents Guide to Cord Blood Foundation

American College of Nurse-Midwives - 'Cord Blood Banking'What It's All About' (from 2008 Journal of Midwifery & Women's Health, 53[2], 161'162)

National Marrow Donor Program - Cord Blood Donation: Frequently Asked Questions'

compiled by Renece Waller-Wise

I will provide this information to the family who asked me. I will encourage them to talk to their doctor or midwife, and determine if it is appropriate for them to consult with a genetic counselor, to address family history and other information that may make it more likely for this child or another family member to need collected cord blood.

I would also provide information on the timing of umbilical cord clamping and suggest they discuss with knowledgable providers and the potential bank, the likelihood of an adequate collection when cord clamping is delayed.

After receiving this information from a variety of sources, I trust the parents will be able to make a decision that feels appropriate to them and I will feel that I have provided evidenced based sources that they found useful in their decision-making process.

How do you answer the question 'Should we private bank our baby's cord blood?' What do you say? What have been your favorite resources on this topic? Please share information that you feel we can all benefit from. I welcome your discussion.

References

American Academy of Pediatrics:Policy Statement: Cord blood banking for potential future transplantation. PEDIATRICS Vol. 119 No. 1 January 1, 2007 pp. 165 -170 (doi: 10.1542/peds.2006-2901)

American Congress of Obstetricians and Gynecologists. (2008) Umbilical Cord Blood Banking. ACOG Committee Opinion No. 399. Obstet Gynecol 2008;111:475'7.

Cord Blood Registry. (2009). Cord blood spotlight: Childbirth educator's guide, 1(2), 1-4.

Drew, D. (2005). Umbilical cord blood banking: A rich source of stem cells for transplant. Advance for Nurse Practitioners, 13(Suppl. 4), S2-S7.

Fox, N. S., Stevens, C., Cuibotariu, R., Rubinstein, P., McCullough, L. B., & Chervenak, F. A. (2007). Umbilical cord blood collection: Do patients really understand? Journal of Perinatal Medicine, 35, 314-321.

Gonzalez-Ryan, L., VanSyckle, K., Coyne, K. D., & Glover, N. (2000). Umbilical cord blood banking: Procedural and ethical concerns for this new birth option. Pediatric Nursing, 26(1), 105-110.

Percer, B. (2009). Umbilical cord blood banking: Helping parents make informed choices. Nursing for Women's Health, 13(3), 216-223

Sullivan, M. J. (2008). Banking on cord blood stem cells. Nature Reviews Cancer, 8, 554-563

Waller-Wise, Renece. (2011) Umbilical cord blood: information for childbirth educators. Journal of Perinatal Education, 20(1), 54-60, doi: 10.1891/1058-1243.20.1.54

Washington State Legislature, Revised Code of Washington 70.54.220 Practitioners to provide information on prenatal testing and cord blood banking. http://apps.leg.wa.gov/rcw/default.aspx?cite=70.54.220 Accessed September 21, 2012.

Wolf, S. (1998). Cord blood banking: A promising new technology. Neonatal Network, 17(4), 5-6.Wolf, S. (1999). Storing lifeblood: Cord blood stem cell banking. American Journal of Nursing, 99(8), 60-68.

Tags