A Rawlsian Approach to Solving the Problem of Genetic Discrimination in Toxic Workplaces

The Human Genome Project (HGP) may well be the beginning of a technological leap that rivals the advent of the Industrial Age.2 The principal goal of the project is to map and fully sequence3 the twenty- four chromosomes that contain the complete genetic contents of a normal human cell. The human genome consists of twenty-two pairs of chromosomes plus the X and Y chromosomes that determine gender.4 As would be expected for such a technologically adventurous undertaking, the HGP has been accompanied by a substantial outpouring of concern about the ethical, legal, and social issues that will arise from this vast new knowledge and anticipated power. These concerns were of such a magnitude that the federal agencies funding the HGP set aside up to five percent of their total budgets to fund projects that would examine the “[e]thical, [l]egal and [s]ocial [i]mplications” of the HGP.5 The ethical, legal, and social problems that surround the potential ramifications of the HGP can be divided into two basic groups: knowledge and power. By this bifurcation I mean that many of the problems involve issues that are raised by the simple availability of a great deal of new knowledge about the genotype6 of people, regardless of whether or not that information is accompanied by any significant new power to affect the possible outcomes of particular genotypes. Other problems, however, would emerge from the availability of any significant new power to alter genotypes or the outcome of particular genotypes. To further illustrate this dichotomy, let us consider the possibility of new genetic information concerning an individual’s probable increased risk of dying of some very deadly form of cancer, such as neuroblastoma glioma. There are ethical, legal, and social problems concerning the use of such knowledge. These problems arise regardless of whether or not there is anything more that a high-risk individual can do beyond current measures, such as monitoring, surgery, and chemotherapy, which are currently largely ineffective to reduce the risk significantly. However, if gene therapy for the particular high risk of neuroblastoma genotype becomes possible, then different issues concerning access and use of that power arise. In both the informational and power categories even more difficult problems arise concerning other possible genotypic information beyond disease susceptibility, such as genotypic information about factors related to intelligence or skills, such as mathematical or musical ability.