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A Research Proposal for an Internet Citizen Jury
Published online by Cambridge University Press: 19 December 2002
After months of hype and expectation, the draft sequence of the human genome, assembled by the International Human Genome Sequencing Consortium (6) and Celera Human Genome Assembly (1), has now been published. As a scientific achievement, unraveling the 30,000 to 40,000 protein-coding genes in the human genome has been compared with landing on the moon or splitting the atom. But, as was the case with these former events, the possibilities of the future are just on the verge of unfolding; now they have to play out in real life. One of the most promising areas, and maybe the first to play out on a large scale, is pharmacogenomics. This new discipline promises improved therapeutic efficacy and effectiveness, minimizing adverse effects, increasing safety and drug tolerance, and reducing the overall cost of disease management for the individual and society (4;5;10;13;25). But some authors have characterized the introduction of pharmacogenomics as a double-edged sword; for every benefit, there are serious moral, ethical, and philosophical issues to be considered (9). It seems increasingly evident that neither science nor technology will obstruct this development, but rather the ethical, social, and legal implications will (21). Issues concerning privacy, justice, stigmatization, discrimination, patenting, and education seem to become dominant issues (15;16;17). It is also essential to point out that pharmacogenomics will crystallize the implications of genetics to a wider public, because drugs based on pharmacogenomics will be introduced to the mass market within the next few years. This means that pharmacogenomics might very well become the best known and thus the most obvious genetically oriented topic of public debate (18).