Ethical Issues in UCB Banking

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?

This list is based on the references:
Pelehach, L. 1996 Lab. Med. 27:588-599
Sugarman, J., Reisner, E. G., Kurtzberg, J. 1995 JAMA 274:1783-1785 Ethical aspects of banking placental blood for transplantation