Umbilical Cord Blood

[DadofDr2B]

Here are some questions to confuse people who are trying to do something smart. Store their children's umbilical chord blood. How do you feel about these questions-

Ethical Issues
in Banking of Umbilical Cord Blood (UCB)




1. Who owns privately banked UCB; the child or the parents?

2.For what genetic diseases should UCB be tested?
The number of possible tests vastly exceeds the amount of available blood; some subset must be selected.

3.Who is allowed access to the results of UCB testing for diseases?

4.Are cord blood banks responsible for notifying parents of mistaken paternal identity?

5. Should commercial cord blood banks be required to exercise truth-in-advertising when marketing their services to expectant families?

6. How can we ensure ethnic diversity in public cord blood registries?
This is similar to the issue of ethnic diversity in the NMDP (National Marrow Donor Program), except that UCB transplants do not have to be matched as precisely as adult bone marrow.

7. Should society seek to avoid economic discrimination in the private banking of cord blood?
Currently, when a family has a known potential need (ex: older sibling with a disease that could be treated by UCB transplant), medical insurers (including Medicaid) are covering the cost of private UCB banking.

8. A transplant recipient might need a booster infusion of donor stem cells or an infusion of donor leukocytes. Should there be a procedure for contacting the donor family with such requests?

9. Who keeps track of the donors to public registries, and for how long?

10. Suppose a donor to a public registry develops an unforeseen genetic disease later in life:
Who is responsible for informing the registry, and any transplant recipient?
Who is liable?

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[uptoolate]

I don't know the answers to all of your questions, but I have banked my daughter's cord blood using a private bank and my sister banked her son's using a public bank. There were not public banks in my area- they are available in a pretty limited number of places.

The parents are the "owners" of the privately banked blood until the child turns 18. Then the blood goes into her custody.

Both the private and public banks screen for infectious disease in the mother and in the child's blood. Public banks toss the blood if it comes up positive for whatever they were looking for- private must do something similar since they do go through the screening process.

Public banks can use the blood for others, for research, or for your family's use. There is no guarantee that that blood will be available for you should you need it, but the likelihood of another recipient using it first is slim.

The price of private banking just went up a lot-at the time I gave birth, funding for public banking had gone down. Can't say anything about current trends in funding.

 

[uptoolate]

Of note, I contacted my the bone marrow registry to let them know that I had stored cord blood privately and was willing to let recipients use it. I was perplexed as to how this should be handled, i.e. whether I could enter my daughter into the bone marrow registry with the notation that she would provide cord blood only (at least until she was able to consent for herself). There was no interest at that point in making privately banked blood accessible to possible recipients.