GINA & Genetic Discrimination
What does GINA stand for?
GINA is an acronym for the Genetic Information Nondiscrimination Act.
What is Genetic Information?
Genetic information means information about:
- a person’s genetic tests
- genetic tests of a person’s family members (up to and including fourth-degree relatives)
- any manifestation of a disease or disorder in a family member
- participation of a person or family in research that includes genetic testing, counseling, or education
What is Genetic Discrimination?
Genetic discrimination occurs when people are treated differently by their insurance company or employer because they have a gene mutation that increases their risk of a disease, such as cancer. People who undergo genetic testing to find out whether they have an alteration in their BRCA1 or BRCA2 gene may be at risk for genetic discrimination.
What EXACTLY does GINA do?
GINA is federal legislation that prevents health insurers from denying coverage, adjusting premiums on the basis of genetic information, or requesting that an individual undergo a genetic test. Similarly, employers are prohibited from using genetic information to make hiring, firing, or promotion decisions. The law also sharply limits an employer’s right to request, require, or purchase an employee’s genetic information. GINA is meant to protect against genetic discrimination.
When will GINA take effect?
President Bush signed GINA into law May 21, 2008. The health insurance provisions of the law will take effect in May 21, 2009 and the employment protections will take effect in November 21, 2009.
How long had Congress been working on this legislation?
Legislation on genetic nondiscrimination was first introduced in the House of Representatives in 1995 by Rep. Louise Slaughter (D-NY)
Prior to GINA, were there NO protections against genetic discrimination?
Not exactly. Genetic information was protected by a patchwork of state and federal regulations, including HIPAA, the Health Insurance Portability and Accountability Act of 1996, but these statutes do not apply in every situation, nor do they provide the comprehensive protections of GINA.
Does GINA pre-empt state law?
No. GINA provides a baseline level of protection for all Americans, but it does not preempt state laws. Many states already have laws that protect against genetic discrimination in health insurance and employment situations, but the degree of protection they provide varies widely. Some state laws are far weaker than GINA, while a few provide broader protections, e.g., by expanding the protection against genetic discrimination to include life, long term care, and disability insurance. Additional protections in state law are not preempted by GINA.
For more information about your state law, see The NHGRI Policy and Legislation Database
To learn more about GINA and how it can protect you, please visit:
by the Coalition for Genetic Fairness
What is the Genetic Information Nondiscrimination Act?
by Genetic Alliance
An Overview of Existing Anti-Discrimination Laws and how they Affect Genetics by the National Institutes of Health
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