The ethics of benefit sharing.

There is an almost universal feeling that it would be unfair if a rich country went into a poor country , took out some of its natural resources, made a marketable product and earned vast revenues from it unless the poor country were given something back. It is intuitively straightforward that a nation, company or person should not make money on somebody else's resources without paying for them. When the resources that benefits are made from originate from a country's natural fauna, flora or metals, the sharing of benefits should bear upon the country or population as a whole, apart from compensating local collaborators for their work in a normal manner. The underlying ethical principle would be that countries should not exploit other countries. In particular, rich countries should not exploit poor countries. If rich countries take natural resources out of developing countries without compensation, it could mean that the economic potential of the exploited countries could no longer be realized when those countries have developed sufficiently to be in a position to exploit their own natural resources. A state of unfairness would also exist if research on genes in a family led to marketable products and revenues for the pharmaceutical industry, unless the family was given something back. If profit results from genomic research on a whole population , the recipient of shared benefits should be the whole population. However, it may be predicted that important new discoveries will often be the result of research on genetic material from a small number of individuals, perhaps even a single person. This will typically be the situation where new disease mechanisms and hence, therapeutic potentials , are discovered in research on a rare disease. An example of a discovery in genomic research that could lead to new therapeutic modalities is the recent, simultaneous detection by several research groups of the primary defect in Tangier disease. The molecular defect turned out to reside in the ABC1 gene (the gene encoding the adenosine triphosphate-binding cassette transporter 1), resulting in deficient lipid transport through the cell membrane to the outside. Apolipoprotein A-1 particles are then unable to pick up lipids to form a normal high-density lipoprotein (HDL) particle and remove lipids from the tissues. HDL cholesterol (HDLC) is often referred to as the 'good cholesterol'. Tangier disease exhibits a deficiency of HDL. At face value, this would seem to be a research result of …