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PEDIATRIC PERSPECTIVE

Cord-blood banking only makes sense if it's a shared effort

How much would you pay to guard your newborn against the future risk of fatal cancer, heart disease, immune problems, and many other serious diseases?

Companies such as Cord Blood Registry, Boston-based Viacord, and about 20 others are betting that anxiety about these illnesses will induce parents to fork over about $1,500 plus a $100 annual fee to store a healthy newborn's umbilical-cord blood as ''insurance."

Painlessly harvested during childbirth from the mother's placenta (which is usually thrown away), cord blood can be frozen for storage, and under certain conditions, used years later for a bone-marrow transplant to cure some cancers and genetic problems.

Cord Blood Registry stated in September that it had 250,000 stored units, and reported that business doubled last year. Some obstetrician colleagues of mine estimate that one in five patients pay to bank cord blood.

Yet the American Academy of Pediatrics states ''private storage of cord blood as 'biological insurance' is unwise," and the American College of Obstetricians and Gynecologists states parents shouldn't feel they must ''invest considerable sums in such a highly speculative venture."

It's quite unlikely a family would ever use privately banked cord blood. Moreover, private storage undermines what could be a far more useful public system that saves lives.

The presumed advantage is that cord blood would be an exact match for the child or family member in need, and so won't be rejected if used someday for a transplant. But many companies exaggerate the likelihood that a family will need privately stored cord blood. For example, Viacord's website states ''the lifetime odds of being diagnosed with a disease treatable by cord-blood stem cells is one in 27" and that future research may increase the risk to ''one in two." These figures sound impressive, but are misleading.

Cord-blood donors who develop genetic problems or cancers like leukemia that fail to respond to chemotherapy can't use their own cord blood because it contains the same genes that caused the disease in the first place. Almost always, these patients need bone marrow donated by someone with different genes. According to the National Heart, Lung, and Blood Institute, the odds of using cord blood for a self-transplant may be as low as one in 200,000.

Some parents bank a child's cord blood to benefit siblings. But Dr. Joanne Kurtzberg, a pioneer in cord-blood transplantation, told the New England Journal of Medicine last fall that fewer than 1,000 children a year would need a sibling's cord blood. Since about 4 million children are born yearly, the chance of needing cord blood from a sibling is roughly one in 4,000. The risk is probably lower in families with no history of genetic syndromes or cancer. Additionally, a child's cord blood has only a one-in-four chance of being an exact match for a brother or sister.

Simply saving cord blood doesn't guarantee it's usable, and the quality of private banks may vary. Though cord-blood banks must register with the Food and Drug Administration, the federal government does not regulate collection and storage procedures. According to Kurtzberg, half of the cord-blood specimens she has considered for transplantation have been unusable.

Some private banks imply that cord blood contains many ''stem cells" that can heal organs like the brain and pancreas someday, thus curing Parkinson's disease, diabetes, and other illnesses. But cord blood isn't rich in the specific kinds of stem cells that might heal these organs, so this use is theoretical at best. Also, some stem cells can be obtained later from children and adults, so storing cord blood isn't the only chance to get them.

In the end, families with a history of cancers like leukemia or certain genetic diseases (like sickle-cell anemia or Hurler's syndrome) that improve with bone-marrow transplants could consider privately banking cord blood with a reputable company, since there is a reasonable chance that a child's cord blood could be used by another member of the family.

But the value of private cord-blood banking for healthy families doesn't seem to justify the costs, though for the well-off, it's at least a harmless way to satisfy medical anxiety, unlike, say, whole-body CT scanning with its radiation exposure and wild-goose-chase findings.

What makes more sense is having a public cord-blood bank that could connect donors to people in need. Today, about a quarter of patients can't find a match when they need a bone-marrow transplant, though about 5 million people are registered bone-marrow donors. (The problem is worse for minorities, because they are underrepresented in the donor pool.) If Americans saved and shared cord blood from all 4 million newborns each year, thousands of lives might be saved.

Consider how regular blood banks work. People donate for altruistic reasons and aren't charged to give. Blood is not treated as a commercial commodity but a publicly managed resource distributed to anyone who needs it.

In a similar vein, Japan has created a centralized, public bank of cord blood by amassing donations from birthing mothers. And it's working. According to The New York Times, more than 40 percent of all bone-marrow transplants in Japan now use publicly banked cord blood.

No true national bank exists in the United States, although two centers, the National Marrow Donor Program in Minneapolis and the New York Blood Center, accept voluntary cord blood donations and allow anyone who needs bone-marrow transplants to search for a match. Almost all US cord-blood transplants have come from these two banks -- not the dozens of private ones -- because they make matches within a much larger group than just one family.

Trading on parents' anxiety is certainly a valid foundation for business, and few argue that private cord-blood banks should be illegal. But their existence shouldn't draw attention away from the real need, which is a national, public cord-blood banking program.

Dr. Darshak Sanghavi, a clinical fellow at Children's Hospital and Harvard Medical School, can be reached at www.darshaksanghavi.com. 

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