Awareness of the US Genetic Information Nondiscrimination Act of 2008: an online survey

Abstract

Objective The US Genetic Information Nondiscrimination Act (GINA) of 2008 prohibits discrimination in health insurance and employment in the USA based on genetic information and provides important protection to Americans who undergo genetic tests. Consumers need to understand GINA to take advantage of the protections it provides against genetic discrimination. However, research regarding people's awareness of this law is scant. This study used an online survey to evaluate people's awareness of the GINA 2008 in the USA. Methods An anonymous online survey was distributed by Qualtrics to a general population panel of US residents in April 2011. The inclusion criterion for the study was adults aged 18–64. The 17-item survey included two multiple-choice questions to measure awareness and knowledge of the GINA. Key findings A total of 295 responses were collected over 4 days. Only 26 respondents (8.8%) indicated they had ever heard of the GINA 2008. When those who have heard of the Act were asked about further details, only 10 people (3.4%) could correctly identify that the GINA prohibits the improper use of genetic information in health insurance and employment. Respondents with male gender, family history of Alzheimer's disease and caregiving experience for Alzheimer's disease patients were more likely to be aware of the GINA 2008. Conclusion Three years after GINA 2008 was signed into US federal law, people's awareness of this law was found to be low. More effective dissemination of information related to this federal law may be required to improve protection against genetic discrimination.