As genetics becomes an increasingly important component of research, health and medicine, protecting genetic information is vital. This year marks the 10th anniversary of the Genetic Information Nondiscrimination Act of 2008 (GINA), a federal law that protects individuals from genetic discrimination in health insurance and employment. While it has been referred to as “first major civil-rights bill of the new century of the life sciences,” most Americans are unaware of GINA, and or are unclear about the protections it offers.
GINA’s Importance to Healthcare
Prior to the establishment of GINA, patients were concerned about disclosing genetic testing results or family history information pertaining to genetic disease. They were afraid that a genetic predisposition to a disease could lead to difficulty obtaining a job or affordable health insurance.
For example, if a patient has a significant family history of cancer, they may have inherited a gene mutation that causes a hereditary cancer syndrome, such as hereditary breast and ovarian cancer syndrome or Lynch syndrome. Healthcare providers use different medical management guidelines for patients with a genetic predisposition to develop certain cancers. These guidelines typically include more frequent screening in order to catch any developing cancers at an earlier, more curable stage, or prophylactic surgical management to prevent the cancer from developing in an organ in the first place. An at-risk patient may be more likely to pursue genetic testing if they knew certain safeguards were in place.
In the fertility world, identifying a genetic mutation is necessary to perform preimplantation genetic testing (PGT) on embryos prior to implantation.
Where GINA Falls Short
While GINA is a step in the right direction for preventing genetic discrimination in the workplace and health insurance, the legislation does not address other areas that could be a concern, including:
- Individuals who already manifest symptoms of the disease
- Life, long-term care or long-term disability insurance
- Mortgage lending or housing
- Admittance into a school or the military
There is also pending legislation proposed by the House Committee on education and the workforce that would allow employers to offer substantial health insurance premium rebates to workers who take part in company wellness programs. While companies cannot require all employees to provide a sample of their DNA for genetic screening at this point, “health risk assessments” may involve a voluntary genetic screening component. Employers may provide additional insurance premium discounts to workers who take part in their companies’ voluntary wellness programs.
The American Society of Human Genetics criticized the bill, saying that it would “fundamentally undermine” privacy protections covered by the Americans with Disabilities Act (ADA) and GINA.
Where To Learn More About GINA
Although this legislation has been around for 10 years, many Americans are unaware of its existence or scope of protection. For example, a survey conducted in four states in 2010 revealed that over 80 percent of respondents were unaware of genetic nondiscrimination laws. In 2014, an online survey of over 1,400 people across the U.S. showed that 79 percent were still unfamiliar with GINA. Many people who claimed to be familiar with GINA had misconceptions about how the law protected against genetic discrimination.
In order to increase awareness, ASHG launched a new, brief video called “GINA Protects You and Your Family: Here’s How” to educate the public on the law’s protections and what to do if they suspect a violation. All individuals should educate themselves about the current protections and limitations of genetic nondiscrimination laws prior to pursing genetic testing.
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Leslie is a board-certified clinical genetic counselor and former Program Manager for the preimplantation genetic testing (PGT) program of the ORM Genomics team and former Project Manager for SharingHealthyGenes.com. She completed her Bachelor’s degree at DePauw University and her Master’s degree in Genetic Counseling at the University of Texas Graduate School of Biomedical Sciences at Houston. Since graduating in 2000, she has worked as a clinical genetic counselor in several specialties including prenatal, pediatric and cancer genetics and has been very involved with the National Society of Genetic Counselors.