Sometimes, with the best of possible intentions, we achieve the very opposite of what we set out to achieve. I will suggest here that the reporting of some of the activities of the mission-orientated agencies which support medical research in Canada may actually be impeding progress towards finding treatments for their diseases of interest. As an example, I will discuss an article entitled “Genetics to Advance Cure for Blindness” by Lillian Newbery which appeared in The Sunday Star (28th April 1985). The article happens to concern the Retinitis Pigmentosa Foundation.

The article begins by reporting that scientists are on the verge of finding a genetic marker for the hereditary disease retinitis pigmentosa. This will allow the detection of the gene in disease-free carriers, thus facilitating genetic councilling. The article points out that further work could lead to the identification of the gene causing retinitis pigmentosa and, through this, the discovery of the defect that causes the disease. This is exciting reporting which probably states quite accurately the current state of research on retinitis pigmentosa. There is little hyperbole and little to disagree with in Ms. Newbery's article so far.

However, on reading on, we find the following statement:

"... in 1982 the Medical Research Council of Canada, the federal granting agency, allotted little more than $1.5 million to all eye research and less than $600,000 to projects related to RP. In the same year, the Retinitis Pigmentosa Foundation of Canada contributed $200,000 to research, one third the total given by Ottawa." (my italics)

To the average reader of The Sunday Star, this implies some criticism of the extent to which Ottawa is supporting eye research. The major contribution of the MRC to the advance being reported is not mentioned. With the very best of intentions Ms. Newbery is pressuring the MRC to give more funds to eye research. Similarly, by multiple avenues, others with interests in a particular  disease are pressuring for their disease to receive more MRC funding. At face value this seems quite laudable.

However, there is a different viewpoint. The discovery of a genetic marker is an important and logical step in the understanding of retinitis pigmentosa. Having reached this point, we can look back and ask what chain of events led here? What discoveries had to be made before this discovery could be made? Did the Retinitis Pigmentosa Foundation support those prior discoveries? Or was the Foundation funding research which, with hindsight, can be seen not to have been so timely as the research which made possible the discovery of genetic markers?

Before genetic markers could be found for various diseases, there had to be fundamental advances in molecular biology and genetics. Progress in these areas was particularly spectacular in the 1970s resulting in the development of recombinant DNA technology. It was this technology whch opened up new approaches to disease. It was the MRC, not the RPF, which made the major contribution to this area. The mission of the MRC is to advance the understanding and treatment of disease. The MRC is no less concerned about retinitis pigmentosa than the RPF. However, the MRC recognized that the time was not yet right for a direct attack on the disease. Accordingly, it placed high on its list of priorities the funding of basic medical research to establish a knowledge-base for a logical and orderly attack on specific diseases.