Certain serious diseases, including several major genetic disorders, cannot be treated effectively unless they are detected before symptoms appear. In such cases, only systematic population screening can ensure that the necessary preventive treatment can be administered to affected individuals. The question of whether to establish such screening programs, which may be relatively costly, is a pressing problem for many public administrations. This study of the costs and benefits of the Quebec Network of Genetic Medicine has as its main objective the development of an analytical framework which can be generally applied to such problems. In this article, we attempt to evaluate the profitability of the Network to society. For the evaluation of the less tangible costs and benefits, we adopted the minimum profitability principle, which essentially involves establishing a lower bound on the value of the profitability of the Network. The net benefits assessed by this study, although certainly underestimated, are still very significant. Since the Network is administered by a team of researchers, the study also throws some light on the links existing between research and development activities on the one hand and public services on the other, and hence on the general question of the socioeconomic profitability of biomedical research.
KIE: The Quebec Network of Genetic Medicine was established in 1969 by a group of researchers concerned with the systematic early detection of congenital disorders in neonates. The authors performed a cost-benefit analysis of the profitability of the Network during the period 1969-1980. They quantified the costs and benefits of detecting phenylketonuria and hypothyroidism and found significant savings to society. In the cases of Tay Sachs disease and tyrosinemia, for which there are no curative treatments, a quantitative analysis was not performed but costs were calculated and potential benefits considered. Overall, the Network was found to be both socially advantageous and financially profitable, at least partly because it has been managed by active researchers.