- Protections against genetic discrimination should extend to all Americans in all circumstances, including employment and insurance.
- The US House of Representatives and the president should pass and sign legislation in 2005 to prohibit discrimination based upon genetic information.
Genetic information nondiscrimination legislation should apply to all public, private, or government-regulated insurance programs. Insurers should be prohibited from denying coverage or instituting higher premiums based on genetic information or genetic predisposition toward future disease. Further, insurers should be prohibited from requesting or requiring individuals take genetic tests and should be prevented from acquiring predictive genetic information or genetic services prior to an individual’s enrollment.
Legislation should also be applicable to employers, employment agencies, training programs, and organized labor organizations. Employers should be prohibited from using an individual’s genetic information to make any employment decisions and should be prohibited from collecting genetic information. Employers should be permitted to monitor the effects of hazardous workplace exposures through genetic testing, and any genetic information held by employers should be confidentially maintained and disclosed only to the employee. Any illegal disclosures must be prosecuted under the Health Insurance Portability and Accountability Act (HIPAA) privacy rule.
Scientists at the National Institutes of Health have completed one of the world’s most intriguing puzzles, the mapping of the human genome. Understanding the human genetic code may provide a cure for cancer, Hansen’s disease, or countless other diseases and genetic disorders. It opens the door for pharmaceuticals genetically tailored to the individual patients to treat or prevent disease.
In a few short years, through pharmacogenetics, prescriptions, and medical claims, genetic information will be an integral part of our health information and easily accessible by employers, insurers, and others. However, Americans fear their genetic information could be used against them, which prevents them from undergoing genetic tests. Their reluctance inhibits prevention, treatment, and important research.
Today, some protections for genetic information exist. Genetic information falls under the HIPAA privacy rule as protected health information. HIPAA prohibits excluding an individual from group coverage because of past or present problems, including genetic information. Specifically, in the absence of a diagnosis of a condition, it prohibits genetic information from being considered a pre-existing condition.1
A majority of states have enacted laws dealing specifically with use of genetic information by employers and health insurance providers. And in February 2000, President Clinton signed an executive order prohibiting federal departments or agencies from requiring genetic test results from applicants or current employees. Federal legislation, however, is necessary to protect all citizens against negative decisions made by employers, insurers, and others based upon the potential that an individual may, at some point in the future, develop a disease or condition.
In March 2005 the US Senate unanimously (98-0) passed the Genetic Information Nondiscrimination Act of 2005 (S 306). Now the US House of Representatives and the president must follow suit.
We cannot afford to let genetic discrimination threaten individuals, families, or future generations or delay important medical discoveries through health research. Without sufficient legislation, damage from and fear of discrimination will continue to increase the cost of healthcare and reduce the productivity of our work force due to the fear of seeking necessary care when needed.
In 2004 President Bush called for an electronic health record by 2014. The president and his secretaries of Health and Human Services and the Office of the National Coordinator for Health Information Technology have taken bold steps to meet the president’s goal and build a health record and network that will meet many of our 21st-century healthcare needs. While surveys have shown that these goals have public support, they also report the public’s fear of misuse of their healthcare information. Passage of genetic nondiscrimination will significantly increase public trust in the record and network envisioned by the president.
Genetic Nondiscrimination Will Be Achieved When:
- Congress passes and the president signs legislation providing protections against and penalties for genetic nondiscrimination.
- Our nation has uniform protections against genetic discrimination.
- Genetic information is only used for legitimate purposes and only as provided by law.
- Individuals and families have the confidence to take genetic tests to discover any predispositions to future diseases.
- Future medical discoveries are made possible through the use of genetic information for research.
- People trust electronic health records and the networks that permit appropriate exchange of individual health information.
1. Health Insurance Portability and Accountability Act, PL 104-191, 701, 11-STAT, 1936 (1996).
Revised and approved by the Board of Directors, American Health Information Management Association, July 21, 2005.
"Position Statement on Genetic Nondiscrimination." Journal of AHIMA 76, no.10 (November/December 2005): 22.