Public meets private: challenges for informed consent and umbilical cord blood banking in Canada.

AuthorSheremeta, Lorraine

This paper is a substantially modified version of a poster presented at the DNA Sampling Conference in Montreal, Quebec, June 4-7, 2006:

Lorraine Sheremeta & Suzanne DeBow, "Public Meets Private: Challenges for Informed Consent and Umbilical Cord Blood Banking in Canada" DNA Sampling Conference, Montreal PQ, June 4-7, 2006 (poster presentation).


As reported previously, the potential utility of umbilical cord blood [UCB] as a source of stem cells for use in the treatment of disease has led to the emergence of several public and private cord blood banks across Canada. (2) In a preliminary discussion paper, the process of informed consent for the donation, collection, processing, storage and future use of UCB was identified as a key area of concern. (3) In the context of private, for-profit UCB banking, the issues are particularly vexing. (4)

Informed consent was the focus at a first multi-stakeholder workshop on umbilical cord blood hosted by the Centre de recherche en droit public at the University of Montreal in August 2005 and discussed in greater detail at a second multi-stakeholder workshop hosted by the Health Law Institute at the University of Alberta in Edmonton in June 2006.

The purpose of this short paper is to identify the key similarities and differences between private and public UCB banks and to further elaborate on the informed consent and contractual challenges that arise in light of these similarities and differences.

In Canada and in other countries, there is a discernable trend towards the collection and storage of UCB for use as a medical treatment of a variety of malignant and non-malignant diseases including leukemia, serious blood disorders, and immune and genetic disorders. (5) Parents may opt to store UCB in a private bank for potential future use by family members or they may opt to store UCB in a public bank where the UCB is made available to anyone who may need it for medical treatment.

At present, more than a dozen cord blood banks exist in Canada (see Table 1), most in the Toronto area. The rapid emergence of private banks in Canada parallels their emergence in the United States and elsewhere. (6)

Table 1: Inventory of Cord Blood Banks in Canada (7) Private UCB Banks in Canada Public UCB Banks in Canada Baby Chord Alberta Cord Blood Bank WEBSITE: WEBSITE: LOCATION: Mississauga, ON LOCATION: Edmonton, AB AFFILIATION: Canadian Cord Blood Registry Canadian Cord Blood Registry Hema Quebec WEBSITE: WEBSITE: LOCATION: Edmonton, AB AFFILIATION: Alberta Cord Blood Bank LOCATION: Montreal, PQ Cells for Life WEBSITE: LOCATION: Markham, ON. AFFILIATION: Victoria Angel Registry of Hope is the philanthropic arm of Cells for Life Cord Blood Bank of Canada WEBSITE: LOCATION: Markham, ON CReATe Cord Blood WEBSITE: LOCATION: Toronto, ON Healthchord Cryogenics WEBSITE: LOCATION: Vancouver, BC Hema Stem Therapeutics WEBSITE: LOCATION: Hamilton, ON Insception Biosciences WEBSITE: LOCATION: Mississauga, ON Lifebank WEBSITE: LOCATION: Burnaby, BC. Progenics WEBSITE: LOCATION: Toronto, ON Stem Sciences Inc. WEBSITE: LOCATION: Toronto, ON Several general concerns have been raised about UCB banks including:

* the lack of adequate regulatory oversight of UCB banks (both public and private) in Canada; (8)

* the overly optimistic nature of information provided to parents about the benefits of UCB banking, transplantation, and cellular therapy for the treatment of a vast array of diseases in the absence of sufficient scientific evidence to support the practice; (9) and

* the rapid proliferation of private banks and the increasing potential that private cord blood banks could go bankrupt. (10)

Specific questions have been raised about informed consent and the collection, storage and use of UCB; these include, among others:

* What is the appropriate timing of informed consent in relation to labour and delivery?

* Who can or must provide informed consent to store UCB for future use?

* What information must be conveyed to the parents at the time of UCB storage?

* How should hypothetical potential future uses of UCB be communicated to potential donors?

* How can research access to non-therapeutic UCB units be facilitated? How should the informed consent process reflect this potential?

* Who can or must provide informed consent for the use of UCB?

* What information must be conveyed to the recipient at the time of transplant?

* Is re-consent to store the sample needed from the child once the child becomes a mature minor or reaches the age of majority?

Public & Private UCB Banking Distinguished

The distinction between...

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