There continues to be much debate in the genetics community about whether genetic discrimination exists. This week’s Grand Rounds spotlights a beautiful piece by Dr. Charles about a patient faced with a serious genetic risk for HNPCC (hereditary nonpolyposis colorectal cancer) and how he responded to her fears of discrimination. He writes,
“ There are three things holding back discrimination. The first is the structure of American health care financing system in which only a minority of people are exposed to individual policy underwriting. Most Americans get their health insurance non-selectively through their employers, Medicare, or Medicaid. The second is a web of state laws that explicitly prohibit genetic discrimination in at least 30 states, and implicitly protect in all but three. Federal laws such as the Americans with Disabilities Act and the Employee Retirement Income Security Act have deterred employers and insurers from discriminating, although they have never been formally tested in the court system. The third is that most diseases result from multiple causative factors, chance, or do not stem from simple, easily identified genes with predictable inheritance.”
Whether or not genetic discrimination exists, many of us are concerned that the fear of discrimination is keeping people who could benefit from genetic testing away from testing. Dr. Charles’ patient is a perfect example: the increased surveillance her test results have warranted may mean the difference between a curable or terminal diagnosis.