The Canadian National Transplant Research Program is a world first - a new national transplant research program that aims to help Canadians waiting for transplants and extend the lives of those who have already received one. The CNTRP, announced at the end of April 2013, will develop new knowledge and health care practices to address barriers to tissue and organ donation and aims to increase the availability of transplants for Canadians in need. Until now, researchers have worked within their own provinces. The CNTRP is the first program to bring together and integrate solid organ transplant, bone marrow transplant and donation and critical care research communities from across the country. The University of Alberta's Dr. Lori West spearheaded this program, which connects more than 100 doctors and researchers from across Canada whose collective goal is to find ways of improving quality of life and increasing chances of survival for Canadians needing organ and tissue transplants.
Professor Timothy Caulfield will lead one of the project's Core's, entitled the Ethical, Economic, Legal and Social (EELS) Issues Core. In addition to providing EELS support to the entire research team, the Core 1 team, which is co-led by Dr. Scott Klarenbach, a physician and health economist at the University of Alberta, and Professor Jennifer Chandler, associate professor in the Faculty of Law at the University of Ottawa, will investigate the relevance of existing legal frameworks and ethical norms, public perceptions/representations in relation to several issues central to public support or fears about donation, and the development and implementation of novel incentives and procurement initiatives. Specifically Professor Caulfield will be looking at ethical and legal issues associated with organ donation, such as whether of not incentives such as money, tax breaks or funeral expenses should be offered to donors. Speaking directly to this issue in a recent media interview Caulfield states "It's almost like an international norm, that we shouldn't use incentives to encourage the donation of organs - be it deceased organs or live organs," he said. "I think we're sensing and this research team is sensing a shift. So what we want to do is re-visit that." He went on to say that offering incentives may actually decrease organ donations because it could turn some people away. "You erode the whole altruistic ethos that has surrounded organ donation," he said. "But what we want to do with this new research project is we want to open it all up and look at it fresh, look at the evidence, consider all the benefits and harms and try to develop new policy."
The CNTRP is receiving $24.9 million in funding, with $11.25 million provided by the Canadian Institutes of Health Research's program grant in transplantation and $2.6 million contributed by six other organizations including Canadian Blood Services and the Canadian Liver Foundation.
Professor Caulfield is also a co-investigator on two Genome Canada grants, in which he and his team will investigate the ethical, legal and social issues associated with new genomic technologies. The international project PACE-'Omics: Personalized, Accessible, Cost-Effective applications of 'Omics technologies, which received S4.6 million in funding and is led by University of Alberta's Chris McCabe and Tania Bubela will investigate the advancement of patient outcomes through personalized medicine treatments that are cost-effective, accessible and attractive for investment. The new four-year project will bring together scientists who develop personalized medicine technologies, industry partners who invest in their research and development, regulators who decide whether treatments are safe and health systems that decide whether to use and pay for the technologies.
The project PEGASUS: Personalized genomics for prenatal aneuploidy screening using maternal blood which received 10.5 million in funding and is led by the University of Laval's François Rousseau and Sylvie Langlois will study the performance and utility of new genomic technologies for screening in pregnant women using maternal blood to detect the presence or not of a fetus with Down syndrome. The team of researchers will identify an evidence-based cost-effective approach for implementation of this new technology in the Canadian health care system. They will develop decision-making tools that will assist couples in making informed decisions, as well as educational tools for health care professionals, all integral components of the implementation of genomics-based non-invasive prenatal diagnosis. The deliverables of this project will enable decision makers, pregnant women and their partner to make informed choices pertaining to prenatal genetic screening and diagnosis, such as screening for Down syndrome, and reduce the risk to pregnancies associated with amniocentesis.
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