Currents in Contemporary Ethics

Abstract

The Genetic Information Nondiscrimination Act of 2008 (GINA)1 was signed into law on May 21, 2008, after a 13-year struggle in Congress. GINA prohibits genetic discrimination in employment and health insurance, thereby supplementing existing federal protections against genetic discrimination in employer-sponsored group health plans contained in the federal Health Insurance Portability and Accountability Act of 1996 (HIPAA)2 and state laws prohibiting genetic discrimination in employment and individual health insurance.3 Although there have been very few documented instances of genetic discrimination in health insurance and employment, the fear of such discrimination has led many at-risk individuals to decline genetic testing in both the clinical and research settings. The findings section of GINA specifically states that federal legislation “is necessary to fully protect the public from discrimination and allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research, and new therapies.”4 The approach and relative merits of GINA are subject to debate, but even its supporters recognize that GINA has major shortcomings.5 Three of the most commonly noted deficiencies are the following.6 First, GINA’s ban on genetic discrimination is not comprehensive. GINA does not apply to life insurance, disability insurance, long-term care insurance, or other potential uses of genetic information. Consequently, it is not clear that its limited protections will be sufficient to allay the fears of individuals currently dissuaded from undergoing genetic testing. Second, GINA prohibits discrimination based on genotype, but not phenotype. Thus, GINA only applies to individuals who are asymptomatic. In the health insurance context, individuals are protected from discrimination based on their genetic risk of disease, but they are not protected if they develop the disease.7 In the overwhelming number of states, health insurance companies may lawfully raise the rates or refuse to renew the policies of individuals based on a change in their health condition. Third, the employment provisions of GINA prohibit employers from requiring or requesting an individual to undergo genetic testing or disclosing the results of a genetic test as a condition of employment.8 Nevertheless, GINA does not affect a key provision of the Americans with Disabilities Act (ADA),9 under which an employer may, after a conditional offer of employment, lawfully require an individual to sign an authorization to disclose all of his or her health records to the employer.10 Because there is currently no feasible way to segregate genetic from non-genetic information in either paper or electronic health records, it must be anticipated that, notwithstanding GINA, many – if not most – custodians of health records will continue the practice of sending requesting employers all of an individual’s health records upon receipt of an authorization.11 A previously unexplored but critical issue is how GINA’s limited coverage and the ADA’s limited coverage apply along the continuum from genotype to expressed disease. Although the same problem of determining when a condition is “manifested” exists under the health insurance provisions of GINA, this commentary is limited to genetic discrimination in employment.