Understanding the molecular basis of hereditary diseases will expedite the search for more effective treatments and cures. The benefits for patients are likely to be unparalleled in the history of medicine. But this new scientific knowledge also raises a number of ethical, legal, and social questions. The National Institutes of Health is dealing with many of these challenges through programs funded by the National Human Genome Research Institute. Congress also has a key role to play in this process.
Genetic discrimination is a growing phenomenon in both health insurance and the workplace.
In fact, some employers have used genetic screening to identify African Americans with the gene mutation for sickle cell anemia. Those with the sickle cell gene mutation were denied jobs, even though many were only carriers of the mutation and would never become ill themselves. In other cases, persons at risk for Huntington's disease have been denied health insurance and lost jobs. We currently face similar concerns in the wake of research showing a genetic basis for breast cancer. Ethnic groups who were participants in research to identify disease-related genes are now legitimately concerned about the adverse effects on insurance coverage and jobs.