Ethical Issues
in Banking of Umbilical Cord Blood (UCB)
Who owns privately banked UCB; the child or the parents?
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.
Who is allowed access to the results of UCB testing for diseases?
Are cord blood banks responsible for notifying parents of mistaken paternal identity?
Should commercial cord blood banks be required to exercise truth-in-advertising when marketing their services to expectant families?
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.
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.
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?
Who keeps track of the donors to public registries, and for how long?
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
Legal Issues
in Banking of Umbilical Cord Blood (UCB)
This summary is based on the article Annas, G.J. (5/13/1999) NEJM, vol.340 no.19 ,
"Waste and Longing -- The Legal Status of Placental-Blood Banking"
by a member of the Health Law Dept at the Boston University School of Public Health.
The legal treatment of bone marrow transplants has been based on the model of
organ donation .
Even though bone marrow is a renewable resource, its collection is invasive and poses risk to the donor. Although the privacy of donor and recipient are protected from each other, careful records are kept of the screening and testing process.
By contrast, the legal treatment of cord blood has been based on the model of
blood donation .
The collection of cord blood poses no risk to the mother or newborn, and was previously considered medical "waste". Consequently, public registries feel justified in banking cord blood anonymously, stripped of all source identity. There are fewer records about the source of a public cord blood unit than there would be about the source of an ordinary blood transfusion.
This model becomes questionable now that cord blood is becoming very desirable as a source of stem cells for research, and is frequently sold for profit. If the cord blood is not waste, but has great value, then the collecting institution "has a fiduciary or trust obligation to inform the mother of the research itself, as well as the possible commercial applications of the research, and to obtain her consent to use the placental blood in this manner". I would add, also an obligation to make forecasts of the possible profits derived from these commercial applications, just like the "forward-looking statements" in a corporate prospectus.
Annas further states, "Permitting the storage company to sell the placental blood to others for therapeutic use, on the other hand, would create conflicts between the storage facility and both the donor (who benefits, if at all, only if the blood is retained in storage) and the recipient (who would want records kept of the donor even though the donors would not)."
Public versus Private Banking: must we choose?
Some people say private cord blood banking is unethical, because it deprives the public of access to this resource. That viewpoint is eloquently expressed in the column, "Whose Cord Blood is it Anyway?" , written by Dr. Jeffrey P. Kahn, Director of the U. Minnesota Center for Bioethics, for the CNN Interactive column, "EthicsMatters" .
As of summer 2003, so few parents in the United States have access to a public bank which is willing to store their donation, that the idea of altruistically giving the blood to society is a moot point. The only choice presented to most parents is between discarding the blood or saving it privately.
List of Relevent References:
Annas, GJ 1999 May 13; NEJM, 340(19):1521-24
"Waste and Longing -- The Legal Status of Placental-Blood Banking"
Burgio GR, & Locatelli F. 1997 Jun; Bone Marrow Transplant 19(12):1163-68
"Transplant of bone marrow and cord blood hematopoietic stem cells in pediatric practice, revisited according to the fundamental principles of bioethics."
Burgio GR, Gluckman E, Locatelli F. 2003 Lancet. 2003 Jan 18; 361(9353):250-2
"Ethical reappraisal of 15 years of cord-blood transplantation."
Pelehach, L. 1996 Lab. Med. 27:588-599
Sugarman, J, Kaalund V, Kodish E, Marshall MF, Reisner EG, Wilfond BS, Wolpe PR. 1997 Sep 17; JAMA. 278(11):938-43
"Ethical issues in umbilical cord blood banking"
Sugarman, J, Reisner, EG, Kurtzberg, J. 1995 Dec 13; JAMA 274(22):1783-1785
"Ethical aspects of banking placental blood for transplantation"