With the promise and pitfalls of umbilical cord blood samples in mind, how should parents decide whether to put their baby’s blood on ice, either for their own family’s future use or as a donation for the greater good? It’s a tricky calculation, one that changes based on a family’s risk threshold, dreams for the future and, of course, money.
Instead of floundering about aimlessly, let’s start with the professionals. In 2015, the American College of Obstetricians and Gynecologists put out an opinion that, at this point, the science doesn’t support routine cord banking. As such, cord banking shouldn’t interfere with normal obstetric or neonatal care, including the timing of cord clamping. “The routine storage of umbilical cord blood as ‘biologic insurance’ against future disease is not recommended,” the authors of that opinion write.
The American Academy of Pediatrics largely agrees. In a 2017 policy statement published in Pediatrics, the authors note that there is an “unquestionable need to study the use of cord blood banking,” but at this point, the uses are still limited. Medical professionals should acquaint themselves with the issues surrounding cord blood banking. (A 2008 survey suggested that only 18 percent of physicians felt confident discussing the pros and cons of public and private cord blood donation.)
“Parents, not infrequently, are getting variable advice,” says pediatrician William Shearer of Baylor College of Medicine and Texas Children’s Hospital, who coauthored the AAP policy statement.
Parents ought to be told about the distinctions between public and private banks, including the additional caveats and financial risks associated with private banks, that policy statement says. And barring any compelling reason, people who would like to donate should strongly consider a public bank, the AAP argues. Likewise, the American Medical Association endorses donations to a public bank, unless there’s a known medical reason a family member might need the umbilical cord cells, such as a leukemia diagnosis for an older child.
Though perhaps outdated, results from a survey reported in 2009 offer a glimpse into the minds of physicians. When asked about their view of private cord banking, none of 93 respondents who perform pediatric stem cell transplants said they would recommend private cord blood banking for a baby who had a healthy older sibling when both parents were of Northern European descent. For parents of a different ethnicity, a still small portion, 11 percent, of the physicians recommended private banking — presumably because it’s more difficult for these parents to find transplant matches.
Both the ACOG and the AAP recommendations urge physicians and other health care professionals advising parents to always disclose any financial interests in private for-profit cord banks. That’s a huge issue, and one that’s being ignored. Parents need to know about the motivations of the person providing guidance.
Such conflicts of interest hit home for me when I was taking a birth class while pregnant with my first daughter. Unprompted, my instructor launched into the many ways that umbilical cord blood was revolutionizing medicine and curing diseases. She then passed around brochures and a sign-up sheet to get more information. As she began describing the free breakfast a private cord bank was hosting the following week, I realized I was listening to a sales pitch. Similar blurred lines between health decisions and marketing, such as brochures for private companies stacked in doctors’ offices, muddy the issue.
If you hear the pros and cons from an unbiased source, and you decide to go with a public bank, you’ll have to find out if the option is actually an option for you. Most public banks don’t have enough money and bandwidth to take every sample that’s being offered. But if you luck out, your hospital may be a Be The Match participant, or you can find a public bank that takes mailed samples. (Doctors and hospitals vary on whether they’ll charge a collection fee, but the donation itself is free.)
Parents interested in privately banking their child’s umbilical cord blood have more homework to do. The first step should be investigating the company: Has it been around for a long time? Does it voluntarily meet some of the same standards as the public cord banks, such as those listed by the AABB or FACT, the Foundation for the Accreditation of Cellular Therapy? How many units of the bank’s cord blood have been used successfully? This list of questions certainly isn’t comprehensive, but it may help you avoid horror stories of unscrupulous companies on the verge of bankruptcy with leaky blood bags, dusty rooms and failing freezers.
Joanne Kurtzberg of Duke University, a pioneer in the field of cord blood research, says that parents who can’t swing the finances for private cord banking, or who can’t find a public bank, shouldn’t feel bad. “I think it’s important for those parents, as well as all parents, to know this has not been proven as a therapy yet for anything other than transplant,” she says. “And for transplant, you generally want a donor, not your own.”
In sorting through the issue, I’ve realized that, frustratingly, there is no magical answer that’s right for everybody. The cells held in umbilical cord blood are fascinating and potentially powerful – and the science on them is speeding along. But it’s impossible to know where the science will ultimately land. Kurtzberg compares the decision to bank umbilical cord blood to an investment that could go either way. “If you want to gamble and see, maybe in the future it will have been the perfect thing to do,” she says. “We just don’t know that today.”