Insurance/Employment Discrimination Concerns

Patients may be concerned about genetic discrimination when going through a cancer genetics evaluation.  Genetic discrimination refers to the use of information as a reason to refuse, charge higher rates, or end existing medical insurance coverage.  Patients are encouraged to read up on genetic discrimination by accessing the following links.  By doing so, patients can learn what genetic discrimination is and thoroughly understand their rights.

Genetic Discrimination Legislation Information
The National Human Genome Research Institute website has information available concerning genetic discrimination legislation.  Patients can find information on how current laws apply to genetics and a timeline of genetic discrimination legislation.

Genetics and Health Insurance: State Anti-Discrimination Laws
The National Conference of State Legislatures website has a chart which outlines the anti-discrimination law for each state.  Currently, there are 41 states who have passed legislation to protect patients' privacy and prevent discrimination.  Most of these states have adopted legislation which outlaws the use of genetics information as a basis for insurance eligibility. Patients can click on their state's citation for more details.

For more information on health insurance here in Pennsylvania, you may read more at A Consumer's Guide to Getting and Keeping Health Insurance in Pennsylvania.

Office for Civil Rights- HIPAA: National Standards to Protect the Privacy of Personal Health Information
The United States Department of Health and Human Services provides patients and medical professionals with information regarding the privacy legislation.  Patients may want to learn about what restrictions medical professionals have on the dissemination of their health records.  Patients can read over frequently asked questions or fact sheets to answer their questions about privacy.

Coalition for Genetic Fairness
The Genetic Information Nondiscrimination Act has been approved by all three House committees of jurisdiction.  On February 14, the Committee on Education and Labor approved GINA by unanimous vote.  On March 21, the Committee on Ways and Means approved GINA, and two days later, on March 23, the Committee on Energy and Commerce approved GINA unanimously.

Genetic Information Nondiscrimination Act (GINA)
This website provides information about GINA, the definition of genetic information, and GINA's health insurance and employment protections.

Genetics & Public Policy Center
This Center, through Johns Hopkins University, helps policy leaders, decision makers, and the public better understand and respond to the challenges and opportunities arising from advances in genetics and their application to human health and well-being.

Cancer Legal Resource Center
This website provides free information and resources on cancer-related legal issues to cancer survivors, caregivers, health care professionals, employers, and others coping with cancer.