Currents in Contemporary Ethics

It has been pending in Congress for twelve years, despite the support of the last two presidential Administrations and the National Institutes of Health. It has been the subject of extensive affirmative lobbying by academic medical centers, pharmaceutical and biotech companies, genetic disease advocacy groups, and civil rights organizations. It has overcome vehement objections by employers and insurers. Its final passage, however, has been thwarted by a few Congressional leaders, who have prevented enactment despite overwhelming bipartisan support in both houses of Congress. Based on this legislative history, one could not help but assume that the Genetic Information Nondiscrimination Act (GINA)1 is a revolutionary piece of legislation that, if finally enacted, would provide extensive, effective, and comprehensive protection against genetic discrimination in health insurance and employment. Unfortunately, such an assessment would be incorrect. Indeed, GINA may be a case of too much ado about too little. GINA is a fatally flawed bill, whose chances of achieving its noble goal of genetic nondiscrimination were doomed from the start by a health finance system in which individual health insurance is medically underwritten and by employment laws that fail to protect the privacy of employee health information. This article puts GINA into perspective by reviewing the need for legislation, the bill's key provisions, and its likely consequences. The article also discusses the essential issues of discrimination and disclosure of genetic information in health insurance and employment that GINA does not address. It observes that the shortcomings of GINA stem from the health finance system of the United States and the absence of effective health privacy legislation. Upon closer inspection, discrimination based on “genetic information” is not a discrete and singular issue; it is a case study for the broader issue of the permissible uses and disclosures of predictive health information.