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Krahn, T.M., Kaposy, C. & Herder, M. (24 May 2018). Justice concerns and investigating questions of funding bias in Down syndrome research at the Canadian Institutes of Health Research. Canadian Bioethics Society 2018 annual conference. Marion McCain Building, Dalhousie University, Halifax, NS.

Abstract

Down syndrome is a genetic difference caused by additional genetic material on the 21^st chromosome, or a third copy of the chromosome. It affects about 1 in 700-900 births, and this birth rate has remained steady or in decline since the 1980s. This is surprising only insofar as this genetic difference is associated with advanced maternal age and the average age of mothers at first birth has been steadily increasing in Canada since the mid-1960s. Many health researchers and administrators believe that widespread deployment of public, prenatal screening programs along with high rates of elective termination for affected pregnancies explain the lack of expected increase in Down syndrome birth rates. Some health researchers and administrators as well as concerned members of the public view the resultant steady or decreasing Down syndrome birth rates as a public health success with a sharply decreasing need for Down syndrome research in the future. Others worry that Down syndrome birth rates will likely continue to decrease as will public commitment to relevant research, services, and supports for this already under-served population.

The Canadian Institutes of Health Research is the primary funding provider for Down syndrome research in Canada. As a public institution, part of CIHR's structuring and objectives are presumably meant to serve the goals of a just society by making sure that the benefits of health research obtain to meet the needs of Canadians in a manner that is unbiased and fair.

The following presentation investigates funding patterns for Down syndrome research at CIHR from 2000-2016. Arguing from a strong commitment to pro-choice values and principles, we defend the view that justice demands that patient access to the results of prenatal testing for Down syndrome should not be thwarted, but that the wider context of choice to proceed or not proceed with a Down syndrome pregnancy needs to take into account the prospects for raising a child with Down syndrome in Canada. Part of that context necessarily involves living with the results of public commitments to relevant research. In this regard, we investigate two possibilities for funding bias at CIHR which may be working in ways to 'leave out' the needs and interests of persons with Down syndrome and their families. First, we will investigate and report on what proportion of the funding for Biomedical and Health Services Down syndrome research (as opposed to Clinical research and Social, Cultural, Environmental, and Population Health research) has been directed to advancing the causes of prenatal testing for Down syndrome and the administration of that testing. Second, we will investigate and report on the potential influence of commercial incentives from within the public institution that may be working in ways to unfairly disadvantage clinical, social science, and interdisciplinary research which has shown strong promise of benefit to persons with Down syndrome and their families in other jurisdictions. We conclude by considering some counter-arguments to our critique.

1.       What are some of the general funding patterns for Down syndrome research at the Canadian Institutes of Health Research from 2000-2016, and more specifically, what proportion of these funds is directly, or indirectly linked to prenatal testing and the administration of screening programmes?

2.       What evidence is there for potential influence of commercial incentives from within the Canadian Institutes of Health Research that may be working in ways to unfairly disadvantage clinical, social science, and interdisciplinary research which has shown strong promise of benefit to persons with Down syndrome and their families?

3.       How might the influence of commercialization on publicly supported health research in Canada be potentially compromising to prospective parents' choices to proceed or not proceed with a Down syndrome pregnancy?

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