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Hereditary Colon Cancer Newsletter

Summer 2000
Genetic Technology and the Law

Banning Genetic Discrimination
By: VHL Family Forum http://www.vhl.org

On February 8, 2000, at an event at the American Academy of Sciences, U.S. President Clinton signed an executive order that prohibits every federal department and agency from using genetic information in any hiring or promotion action. While this applies only to employees of the federal government, it is hoped that it will lead the way for additional legislation at the state and national level to protect other workers.

This historic action ensures that critical health information from genetic tests is not used against federal employees. The President also endorsed the Genetic Nondiscrimination in Health Insurance and Employment Act of 1999, introduced by Senator Daschle and Congresswoman Slaughter, which would extend these protections to the private sector and to individuals purchasing health insurance. Finally, the President stated his strong belief that efforts to find genetic cures for disease must not undermine vital patient protections, and he asked the Secretary of Health and Human Services (HHS) to expedite FDA and NIH reviews of gene therapy guidelines and regulations.

Discrimination in the Work Place

This executive order, endorsed by the American Medical Association, the American College of Medical Genetics, the National Society of Genetic Counselors, and the Genetic Alliance will:

Prohibit federal employers from requiring or requesting genetic tests as a condition of being hired or receiving benefits. Employers may not request or require employees to undergo genetic test in order to evaluate an employee's ability to perform his or her job.
Prohibit federal employers from using protected genetic information to classify employees in a manner that deprives them of advancement opportunities. Employers may not deny employee promotions or overseas posts because of a genetic predisposition for certain illnesses.
Provide strong privacy protections to any genetic information used for medical treatment and research. Under the executive order, obtaining or disclosing genetic information about employees or potential employees is prohibited, except when it is necessary to provide medical treatment to employees, ensure workplace health and safety, or provide occupational and health researchers access to data. In every case where genetic information about employees is obtained, it will be subject to all Federal and state privacy protections.

While these advances promise great benefits, they also carry potential perils. This executive order is only one step in a lengthy process of creating the checks and balances in society necessary to use this powerful new information for good, and not for discriminatory purposes.