Public Meets Private: Challenges for Informed Consent and Umbilical Cord Blood Banking in Canada

Article excerpt

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).

Background

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: www.babychord.com                    WEBSITE: www.acbb.ca
LOCATION: Mississauga, ON                     LOCATION: Edmonton, AB
                                              AFFILIATION: Canadian Cord
                                              Blood Registry

Canadian Cord Blood Registry                  Hema Quebec
WEBSITE: www.ccbr.ca                          WEBSITE:
LOCATION: Edmonton, AB                        www.hema-quebec.qc.ca
AFFILIATION: Alberta Cord Blood Bank          LOCATION: Montreal, PQ

Cells for Life
WEBSITE: www.cellsforlife.com
LOCATION: Markham, ON.
AFFILIATION: Victoria Angel Registry of Hope
is the philanthropic arm of Cells for Life

Cord Blood Bank of Canada
WEBSITE: www.cordbloodbankofcanada.com
LOCATION: Markham, ON

CReATe Cord Blood
WEBSITE: www.createcordbank.com
LOCATION: Toronto, ON

Healthchord Cryogenics
WEBSITE: www.healthcord.com
LOCATION: Vancouver, BC

Hema Stem Therapeutics
WEBSITE: www.hemastem.com
LOCATION: Hamilton, ON

Insception Biosciences
WEBSITE: www.insception.com
LOCATION: Mississauga, ON

Lifebank
WEBSITE: www.lifebank.com
LOCATION: Burnaby, BC.

Progenics
WEBSITE: www.progenicscryobank.com
LOCATION: Toronto, ON

Stem Sciences Inc.
WEBSITE: www.stemsciences.com
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. …