A first-of-its-kind study carried out in India, published on May 26 in the journal PLOS ONE, has revealed that the general understanding of umbilical cord blood banking is “poor”. Only 26.5 per cent of the 254 women studied knew what it meant.

Besides poor awareness, one-third of the women studied had “unrealistic expectations” from cord blood banking. One-fourth of them believed stem cells in the cord blood can be used to treat blood pressure, diabetes, and cancer, and even for regenerating organs. At the same time, one-third of pregnant women were unsure what to expect out of cord blood banking.

Private banks high on hype

As expected, the culprit behind providing misleading information and hyping up the benefits of cord blood banking is none other than private cord blood banks. “Advertisements [by private banks] are often misleading for the public and lack comprehensive and accurate information,” says the Indian Council of Medical Research (ICMR) 2013 national guidelines for stem cell research.

“Private banks don’t talk to me but directly approach pregnant women and enrol them by glamorising the information,” says Dr. Deeksha Pandey, the first author of the PLOS ONE paper from the Department of Obstetrics & Gynaecology, Manipal University. Unsurprisingly, 31 per cent of the women studied were aware of private cord blood banks while only 18 per cent knew about public banks.

Dr. Pandey found that 52 per cent of pregnant women preferred to get information on cord blood banking from their obstetricians. Unfortunately, ignorance is rife even among doctors. A March 2016 study in the Indian Journal of Pediatrics found that 58 per cent of doctors were unaware of the indications for which cord blood could be used. While 37 per cent doctors thought cord blood could be used for treating any genetic disorder and mental retardation, another 19 per cent thought cord blood from a child could be used to treat his thalassemia.

 Leukaemia is the primary indication where cord blood stem cells are routinely used.

Public versus private banks

That 38 per cent of the women studied did not plan to bank their cord blood as it was costly is proof that they knew nothing beyond private banks. Public cord blood banks work on the same principle of blood banks — anyone can donate cord blood of a newborn, while potential users pay a fee for using the stored units. The Chennai-based Jeevan Stem Cell Bank, a public cord bank, has so far stored nearly 5,000 units. On the other hand, private banks charge a huge fee for storing a child’s cord blood, and units collected and stored are solely available for the individual donor or the immediate family.

It is appropriate to store cord blood in a private bank only when one of the older siblings has a disease that can be cured by using cord blood stem cells. But in other cases, it should be “discouraged” as the chances of self-use are slim — 1 in 1,000 to more than 1 in 2,00,000, the American Academy of Pediatrics noted in its recommendations (1999 and 2007). “Private storage of cord blood as ‘biological insurance’ is unwise,” the Academy stressed. Current research using cord blood has so far not led to any specific therapeutic application and the future therapeutic possibilities are of a very hypothetical nature.

Also, medicine, as it is currently practised, does not permit using cord blood of a child who has developed certain genetic disorders and malignancies. This is because the stem cells in the cord blood are already preconditioned to become malignant or develop the disorders when transplanted into the same individual or others. It is for these reasons that ICMR’s national guidelines said that there is “no scientific basis for preservation of cord blood for future self-use and this practice is not recommended”.

Meanwhile, nearly 70 per cent of patients with leukaemia, severe aplastic anaemia and congenital or other acquired disorders are unlikely to have a suitable family donor.  The chances of such patients, particularly Indians, finding a suitable match increases when more number of units is stored in Indian public cord banks. Since the first transplantation of umbilical cord blood in 1988, more than 20,000 cord blood transplantations have been performed across the world, notes a June 2014 paper in the Journal of Blood Medicine.

Published in The Hindu on June 12, 2016