ethics overview

Every day there is genetic information in the news.  Sometimes it is exciting, like the discovery of a gene linked with a disease.  Other times it is discouraging, such as when someone is being treated unfairly because they have a genetic disease.  Unfair treatment based on genetic information is called genetic discrimination.  Most people do not know about the laws that protect them from genetic discrimination.  For more information about some of these laws you can click on the links listed at the bottom of this page.

federal laws

• Genetic Information Nondiscrimination Act (GINA) is a bill recently passed in Congress.  When it goes into effect in 2009 it will provide protection from discrimination in the workplace and by health insurance companies based on a person’s genetic test results, information, or family history.  Until that time, the laws listed below will provide some protection.  For fact sheets on GINA you can check out the Genetic Alliance, Coalition for Genetic Fairness and Genetics and Public Policy Center. 
• Americans with Disabilities Act (ADA) protects against discrimination in the workplace.  To be covered by this law you must have a disability or be diagnosed with a disease.
• Health Insurance Portability and Accountability Act (HIPAA) of 1996 prevents group health plans from using genetic information to decide who is able to get insurance.  HIPPA also stops insurance plans from making people take a genetic test or increasing the cost of a plan if someone has a gene that makes it more likely they will get a genetic disease.  A summary of the Privacy Rule and fact sheets on Privacy and Your Health Informationand Your Health Information Privacy Rights can be found on this site as well.
• The Executive order of 2000 protects against unfair treatment in the federal workplace.

state genetics laws

• North Carolinians have protections against unfair treatment in the workplace .  The laws protecting North Carolinians from health insurance discrimination can be found under Genetic Information in Health Insurance and Discriminatory Practices Prohibited.
• Laws that protect people from unfair treatment based on genetic information vary from state to state.  Find out what your state laws are. 

health insurance related resources

• The U.S. Department of Health and Human Services offers information about current health privacy protections.
• Georgetown University's Consumer Coalition for Health Privacy site has breakdowns of federal and state health privacy laws and you can learn about ways to protect your health privacy.
• Visit the Genetics and Health Insurance page for information on the current laws that provide protection.

employment related resources

• Visit the Genetics and Employment page at the National Conference of State Legislatures site.
• The Americans with Disabilities Act (ADA) has general information on discrimination issues.
• The U.S. Equal Employment Opportunity Commission (EEOC) offers general information about issues related to genetic discrimination.
• President Clinton banned unfair treatment in the federal workplace with the Executive order of 2000.

general resources