While preparing a consulting report on ethical issues associated with priority setting (a.k.a. resource allocation, rationing) in the stem cell research context, I was surprised to find that there are no published Canadian studies of priority-setting matters pertaining specifically to stem cell research or stem cell-based technologies. A search of the Canadian Institutes of Health Research grants database produced 47 research projects (concluded and ongoing) on priority-setting issues, but none focused on the (potential) integration of stem cell technologies into health care (Note: see update at bottom). Emerging biotechnologies are not well represented either; I found only a 2004 study of priority setting for genetic services led by Fiona Miller and Rosanna Weksberg and a 2003 study on a similar topic by Mita Giacomini.
Experts generally agree that new and cutting edge health care technologies give rise to acute issues of priority setting. This is because such technologies often emerge at high cost (in a bid to recoup research and development expenses), and corresponding high public demand places significant constraints on the resources needed to integrate them into health care. Stem cell therapies will likely follow this trend, and considering the interplay of revolutionary promise and persistent controversy attending the field, may even generate novel priority-setting challenges for health care decision makers.
Despite the lack of Canadian studies, it appears that stem cell research priorities are being set “behind the scenes” by a variety of institutions including the federal government (particularly through the House of Commons Standing Committee on Health), stem cell researchers and research networks, public and private research funders and patient/research advocacy groups such as the Cancer Stem Cell Consortium, Canadian Blood Services (which manages the OneMatch Stem Cell and Marrow Network), Héma-Québec, Juvenile Diabetes Research Foundation and ALS Society of Canada. Current research and related health care priorities appear to include the development of therapies for chronic and degenerative diseases (focusing especially on juvenile populations), issuance of guidelines for clinical trials relating to cellular therapy, the establishment of a public cord blood bank and management of stem cell (bone marrow) donor registries and services.
In general, these priority-setting efforts are not clearly articulated and appear uncoordinated. Not much thought appears to have been given to how the interests and goals of the various actors fit with each other or to building the necessary capacity for tackling the individual and common constraints that these institutions are likely to face in addressing the anticipated high demand for stem cell therapies. Information on provincial initiatives is virtually nonexistent. This is despite the fact that provincial ministries of health are primarily responsible for deciding whether and how to adopt stem cell technologies for health care. It is also unclear whether these institutions are following established ethical and logistical standards in setting priorities for stem cell research. All these areas are ripe for scholarly study, and one hopes that the experts step up to the challenge sooner rather than later.
Update: Lisa Willemse just informed me about an ongoing Stem Cell Network-funded study led by Tania Bubela that appears to be focused on the research areas identified above. The project aims to “generate options to guide decision-making for future research priorities aimed at promoting the development of stem cell therapies that are well-placed for effective and efficient introduction into public health care systems.”
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