January-February 2014, Volume 11, Issue 1
Getting the Word Out on the Genetic Information Nondiscrimination Act
Published on: January 01, 2014
Discrimination, real or perceived, based on any factor, is unacceptable in our society. As the Human Genome Project began in the early 1990s, I recognized that sequencing and characterizing the genome would further our understanding of human health and disease, but it could also create the potential for discriminatory use of genetic information. Thus, I began working on legislation banning genetic discrimination. After a 14-year-long effort, my bill, the Genetic Information Nondiscrimination Act (GINA), was passed into law. My good friend, the late Senator Ted Kennedy, described it as the first major civil rights bill of the 21st century.
My desire was to quell public fear of losing one’s job or health insurance due to discrimination based on their genetic makeup and to encourage participation in research that would eventually lead to new treatments and medical breakthroughs. I first introduced GINA in 1995 with the hope that science and policy would develop hand in hand, as it rarely does. Our goal was to have the bill passed prior to the completion of the Human Genome Project, which happened in 2003. Regrettably, the task of educating my peers on Capitol Hill about the need for the protections offered by GINA took a bit longer, but in 2008, President George W. Bush signed it into law.
GINA stipulates that it is illegal for any health insurance company to deny coverage to, or charge higher premiums to, a healthy individual based on his or her genetic information. It also protects the privacy of family genetic information and prohibits insurance companies from requesting specific genetic tests. GINA also prohibits employers from hiring, firing, promoting, or assigning based on the genetic information of an employee or potential employee.
Because of GINA, people can get genetic testing to determine their risk of diseases such as breast cancer, Huntington’s disease, and Alzheimer’s disease, without fear that the information gained from those tests will be used in employment or health insurance decisions. Hematology was one of the earliest adopters of genetic testing, using available technology to aid in the diagnosis and management of leukemias and lymphomas, beginning with the identification of the Philadelphia chromosome to diagnose chronic myeloid leukemia (CML) through the development of imatinib, a targeted treatment for this disease. This early success story for personalized medicine will no doubt be repeated in the years to come.
Although GINA has been the law of the land for five years, the public is largely unaware of its provisions.1 Many Americans still fear that if they undergo genetic testing or participate in research, employers and insurance companies can obtain the results and use such information to raise their rates or fire them. This lack of understanding does not apply only to the general public, unfortunately. A recent study indicated that 55 percent of family physicians were unaware of the GINA-based protections that exist.2
It is the duty of both public officials and doctors to inform American citizens about their choices, options, and rights. We need your help. I encourage you to talk to your patients – and your colleagues – about the benefits and necessity of genetic testing, as well as the rights and protections secured by GINA. Ensuring that patients are informed about their medical decisions and free from the fear of discrimination is an essential component of health care.
Coalition for Health Professional Education in Genetics (NCHPEG) has
resources for physicians wishing to speak to their patients about genetic
testing and GINA.
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A 2010 survey by Cogent Research titled “Cogent Genomics Attitudes and Trends: 2010” found that 77% of Americans surveyed were unaware of any laws protecting the privacy of their genetic information.
Laedtke AL, O’Neill SM, Rubinstein WS, et al. Family physicians’ awareness and knowledge of the Genetic Information Nondiscrimination Act (GINA). Genet Couns. 2012;21:345-352.