Genetic Discrimination: An issue for the 21st Century With the mapping of the human DNA code, it is now possible that employers and insurance companies can keep and track your genetic information. They could then use that information to decide if they should give you insurance or even a job, based on what kind of genetic risks or factors your DNA might contain. The federal government has begun to take some actions to protect individuals from this new form of discrimination. Congress has held hearings on this issue and various agencies are conducting studies. In February, President Clinton signed Executive Order 13145, which prohibits discrimination on the basis of protected genetic information in the Executive branch. The President expressed the hope that the Executive Order would "set an example and pose a challenge for every employer in America" to adopt a policy not to discriminate on the basis of protected genetic information, "because . . . no employer should ever review your genetic records along with your resume." The Executive order is intended to ensure that Executive branch applicants and employees are judged on their current ability to perform the jobs they seek or hold, and not on the possibility that they might, some day, develop a disease or condition. Accordingly, this new DNA policy places stringent limits on the collection, use, and disclosure of protected genetic information. Below are some of the details of how this new anti-discrimination policy works and how it might apply to your job or business. Adverse Employment Actions Based on Protected Genetic Information The Executive Order states that the policy of the federal government is to provide equal employment opportunity to all qualified persons. Federal policy prohibits a department or agency from discharging, failing to hire, or otherwise discriminating against a covered individual with respect to the individual's compensation and terms, conditions, and privileges of employment based on the person's "protected genetic information," or the person's request for, or receipt of, genetic services. Federal policy also prohibits a department or agency from limiting, segregating, or classifying its employees based on protected genetic information. Here's an example of how it might work - Example A : Lisa works for a federal agency in a non-managerial position. Lisa's supervisor, Karen, learns that she took part in a breast cancer study that included genetic testing. Lisa has expressed an interest in, and is qualified for another position that the agency views as career-enhancing. If Karen were to deny Lisa's request for the position based on her participation in the breast cancer study, she would be acting in violation of the Executive Order. Karen would be limiting Lisa's employment opportunities based on her receipt of genetic services. Example B: Tonya learns that David's father died recently of pancreatic cancer and that David's brother is seriously ill with the same disease. David is a well-respected and highly-rated subordinate employee in Tonya's research division. Budget cuts to the division will require layoffs, and Tonya will lose two employee slots. If Tonya decides to identify David's slot for elimination based on his family history of cancer, she will be violating the Executive Order. Questions & Answers Does the DNA policy create any new rights for applicants or employees? No. The policy does not create new rights. The Executive Order established a policy of nondiscrimination based on "protected genetic information" and directed the head of each department or agency to identify a high-level official to be responsible for implementing this policy. What does "protected genetic information" mean? Information about the results of an individual's genetic tests, and the genetic tests of that individual's family members; and information about the occurrence of disease, or medical condition or disorder in family members of the individual (i.e., family medical history). Why is family medical history considered "protected genetic information"? Family medical history does not provide information about an individual's current ability to perform a job. Therefore, family medical history, like genetic test results, is "protected genetic information" under the policy. Is information about an applicant's or an employee's current health status considered "protected genetic information"? No. "Protected genetic information" does not include an applicant's or an employee's current health status information, such as age, gender, and physical examination results, exclusive of family medical history. What is prohibited under the Executive Order? Departments and agencies are prohibited from using "protected genetic information" for employment decisions. They also are prohibited from collecting and disclosing such information, with limited exceptions. May departments and agencies require applicants and employees to take genetic tests? Generally, no. However, there are two limited exceptions to the prohibition on genetic testing. First, the Executive Order allows genetic monitoring of employees for the effects of toxic substances in the workplace under limited circumstances. Second, the Executive Order permits department or agency health offices to collect "protected genetic information" about employees who use the genetic or health care services offered by the health office. In both instances, the Executive Order imposes several requirements in order to prevent the departments or agencies from using the "protected genetic information" as a basis for employment decisions. May departments and agencies disclose "protected genetic information"? Generally, no. Disclosure is permitted only: to the employee or in response to a judicial order or a congressional subpoena; and as required by federal law. Can an individual be regarded as having a substantially limiting impairment based on the results of genetic tests or family medical history? Yes. A department or agency that makes an adverse employment decision because of an individual's genetic test results or family medical history may be regarding an individual with no known impairments as having an impairment that substantially limits a major life activity. Under the Rehabilitation Act, the term "impairment" means any physiological disorder. A misspelling or alteration in a gene causes cellular and molecular changes leading to disturbances in cell function. Therefore, the misspelling or alteration is an "impairment" for purposes of section 501 of the Rehabilitation Act. In Bragdon v. Abbott, the Supreme Court held that reproduction is a major lifeactivity. If an individual has a misspelled or altered gene associated with a severe or fatal disease or disorder, and this misspelled or altered gene substantially limits him or her in the major life activity of reproduction, then the individual would have an actual disability. As you can see from the above questions and answers, the new ability to use DNA information to find disabilities or potential future medical problems in individuals opens a whole new realm of issues and concerns that will have to be dealt with by the legal system, policy makers and society as a whole.

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