Genetic Nondiscrimination

Last year, UW's Forum on Science Ethics and Policy sponsored a talk by Tim Leshan, Branch Chief & Senior Policy Analyst of the National Human Genome Research Institute. He titled his talk, The Fear of Genetic Discrimination and the Need for a Public Policy Solution. In addition to providing some insight to young scientists about how to interact with government on policy issues, he presented an account of his decade long effort to insure that Americans need not fear denial of employment or health insurance on the basis of their genes.

All of that work has paid off. House Resolution 493, the Genetic Information Nondiscrimination Act (GINA) passed 420-3. GINA's highlights (from the Thomas Registry) include:

• a prohibition against discrimination by group health plans, health insurance, and Medicare issuers on the basis of genetic information,
• extending medical privacy and confidentiality rules to the disclosure of genetic information,
• making it illegal for an employer, employment agency, labor organization, or training program to discriminate against an individual or deprive such individual of employment opportunities because of genetic information, and
• penalties for doing any of these things.
  

Opponents of this measure claim the legislation is unnecessary because in real life, sufferers of genetic discrimination are rare. I suppose this is true, but complete genetic screens are not exactly commonplace yet, and there are plenty of cases of individuals paying for genetic tests out of pocket to avoid discovery by insurance companies. Depending on the particulars of its enforcement, this could be a good example of proactive governance.

If it makes it to the Senate's legislative calender, GINA should easily pass. Bush even has said he will sign it into law. If you have opinions on this matter, call or email your senator and refer to S.358.