About Lynch Syndrome
Genetic Discrimination Laws
Genetic discrimination occurs if people are treated unfairly because of differences in their DNA that increase their chances of getting a certain disease. For example, a health insurer might refuse to give coverage to a woman who has a DNA difference that raises her odds of getting breast cancer. Employers also could use DNA information to decide whether to hire or fire workers.
Who needs protection from genetic discrimination?
Everyone should care about the potential for genetic discrimination. Every person has dozens of DNA differences that could increase or decrease his or her chance of getting a disease such as diabetes, heart disease, cancer or Alzheimer's disease. It is important to remember that these DNA differences don't always mean someone will develop a disease, just that the risk to get the disease may be greater.
More and more tests are being developed to find DNA differences that affect our health. Called genetic tests, these tests will become a routine part of health care in the future. Health care providers will use information about each person's DNA to develop more individualized ways of detecting, treating and preventing disease. But unless this DNA information is protected, it could be used to discriminate against people.
What is the Genetic Information Nondiscrimination Act (GINA)?
The Genetic Information Nondiscrimination Act of 2008, also referred to as GINA, is a federal law that protects Americans from being treated unfairly because of differences in their DNA that may affect their health. The law prevents discrimination from health insurers and employers.
Why is the law needed?
The law helps ease concerns about discrimination that might keep some people from getting genetic tests that could benefit their health. The law also enables people to take part in research studies without fear that their DNA information might be used against them in health insurance or the workplace.
What is included in the law?
The law protects people from discrimination by health insurers and employers on the basis of DNA information. DNA, or genetic information, includes: A person or any family member’s genetic tests, family history of a genetic disease and receipt of genetic services and participation in any genetic research. Genetic information does not include information about the sex or age of any person.
What is not included?
The law does not cover life insurance, disability insurance and long-term care insurance.
How does the federal law affect state laws?
Before the federal law passed, many states passed laws against genetic discrimination. The degree of protection from these laws varies widely among the different states. The federal law sets a minimum standard of protection that must be met in all states. It does not weaken the protections provided by state laws.
To review state laws on genetic discrimination, visit the Web site National Conference of State Legislatures.
- Log on to
http://www.ncsl.org
.
- Move your cursor to “Issues and Research.” A drop box will appear.
- Move down and click on “Health.”
- Scroll down and click on “Special Topics.”
- Scroll down and click on “Genetics
Where can I find more information?
Other Federal Anti-Discrimination Laws and How They Apply to Genetics
Americans with Disabilities Act of 1990 (ADA)
Title I of the Americans with Disabilities Act (ADA) and similar disability-based anti- discrimination laws such as the Rehabilitation Act of 1973, do not completely address genetic information, but they provide some protections in the workplace.
The Americans with Disabilities Act
- Prohibits discrimination against a person who is regarded as having a disability.
- Protects individuals with symptomatic genetic disabilities.
- Does not protect against discrimination based on unexpressed genetic conditions.
- Does not protect potential workers from requirements or requests to provide genetic information to their employers after a conditional offer of employment.
- Does not protect workers from requirements to provide medical information that is job
- related and consistent with business necessity.
In March 1995, the Equal Employment Opportunity Commission (EEOC) issued an interpretation of the ADA. The guidance, however, is limited in scope and legal effect. It is policy guidance that does not have the same legal binding effect on a court, as does a statute or regulation, and it has not been tested in court.
According to the Interpretation:
- Entities that discriminate on the basis of genetic predisposition are treating the individuals as having impairments, which would make such individuals covered by the ADA.
- The ADA does not cover unaffected carriers of recessive and X-linked disorders, individuals who genetic testing or family history may identify as being at high risk of developing late onset genetic disorders.
Health Insurance Portability and Accountability Act of 1996 (HIPAA)
Federal Policy Recommendations Including HIPAA:
-
Applies to employer-based and commercially issued group health insurance only.
- HIPAA is the only federal law that directly addresses the issue of genetic discrimination. There is no similar law applying to private individuals seeking health insurance in the individual market.
- Prohibits group health plans from using any health status-related factor, including genetic information, as a basis for denying or limiting eligibility for coverage or for increasing premiums.
- Limits exclusions for preexisting conditions in group health plans to 12 months and prohibits such exclusions if the individual has been covered previously for that condition for 12 months or more.
- States that genetic information in the absence of a current diagnosis of illness shall not be considered a preexisting condition.
- Does not prohibit employers from refusing to offer health coverage.
HIPAA National Standards to Protect Patients' Personal Medical Records 2002
This regulation protects medical records and other personal health information maintained by health care providers, hospitals, health plans, health insurers and health care clearinghouses. The regulation was mandated when Congress failed to pass comprehensive privacy legislation (as required by HIPAA) by 1999. The new standards:
- Limit the nonconsensual use and release of private health information.
- Give patients new rights to access their medical records and to know who has accessed them. Restrict most disclosure of health information to the minimum needed for the intended purpose.
- Establish new criminal and civil sanctions for improper use or disclosure Establish new requirements for access to records by researchers and others.
These standards are not specific to genetics; they are sweeping regulations governing all personal health information.
Title VII of the Civil Rights Act of 1964
- An argument could be made that genetic discrimination based on "racially or ethnically linked" genetic disorders constitutes unlawful race or ethnicity discrimination.
- Protection is available only where an employer engages in discrimination based on a genetic trait that is substantially related to a particular race or ethnic group.
- A strong relationship between race or national origin has been established for only a few diseases.
Source: National Human Genome Research Institute: http://www.genome.gov/12513979, 01/25/10
For More Information
Genetic Information Nondiscrimination Act
This website provides an introduction to the Genetic Information Nondiscrimination Act and its protections in health insurance and employment. It includes answers to common questions about GINA and examples to help you learn. This website was created by Genetic Alliance, the Genetics and Public Policy Center at the Johns Hopkins University, and the National Coalition for Health Professional Education in Genetics through funding by The Pew Charitable Trusts.
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