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.

Fear of Misuse

Progress in genetics has helped researchers and health care providers to detect and prevent health disorders; however, it can also be misused to discriminate against or stigmatize individuals. Some employers may try to use genetic tests to discriminate against workers -- even those who have not yet or who may never show signs of illness -- in order to avoid increased costs associated with workers who are genetically predisposed to particular ailments.

In a 1996 study published in Science, 15 percent of individuals at risk of developing a genetic condition said that they had been asked questions about genetic diseases on job applications. Thirteen percent of the respondents reported that they or another family member had been denied a job or fired from a job because of a genetic condition in the family.

Confidentiality of genetic test results is a major concern for the public. A 1997 study by the National Center for Genome Resources found that 63 percent of people would not take genetic tests if employers could access the results -- and that almost 50 percent of people believe that most employers will ask employees to take genetic tests in the future.

Discrimination in the Workplace

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 tests 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.

The President called on Congress to protect the private genetic information of all Americans, extending similar protections to the private sector. In 1996, the President signed the Health Insurance Portability and Accountability Act (HIPAA), which prevents group health insurers from using genetic information to deny individual health insurance benefits. The Daschle-Slaughter legislation finishes the job begun by HIPAA by ensuring that genetic information used to help predict, prevent, and treat diseases will not also be used to discriminate against Americans seeking employment, promotion, or health insurance.

At the President's request, the Secretary of Health and Human Services will instruct FDA and NIH to expedite their review of gene therapy guidelines and regulations -- to determine whether the current informed consent requirements need to be strengthened, and to ensure that information about these trials is shared with the public.

The Human Genome Research Project has made swift progress, and is on schedule to finish a draft of the human genome by April of 2000. While these advances promise great benefits, they also carry potential perils. This executive order is only one step in the lengthy process of creating the checks and balances in society necessary to use this powerful new information for good, and not for discriminatory purposes.

The National Organization for Rare Disorders provides some information of interest to people with genetic diseases at http://www.rarediseases.org See also the Institute for Health Care Research and Policy at Georgetown University, an academic effort to study this issue from the consumer perspective, at http://www.healthprivacy.org They post concise information about proposed legislation, and suggest consumer action to assist in passing appropriate legislation. There are powerful opposition forces to legislation in this space, especially from pharmaceutical and insurance companies, so be sure when you read people’s opinions that you know what their underlying agendas are.

As printed in the VHL Family Forum 8:1, March 2000. For permission to reprint, please contact VHL Family Alliance, editor@vhl.org. Further information is available from the VHL Family Alliance, info@vhl.org.