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This is the full text of the American College of Occupational and Environmental Medicine’s (ACOEM) position statement on genetic testing: The ACOEM, representing more than 6,000 physicians, is the world’s largest medical society committed to promoting and protecting the health, safety, productivity, and well-being of people at work and in their environment.
The mapping and sequencing of the entire human genome, which is currently under way as part of the Human Genome Project, is anticipated to produce an explosion of new genetic tests for the detection of diseases and increased susceptibility for disease. If effective interventions for those diseases are forthcoming, genetic tests offer the prospect of a new era for the prevention and treatment of such disorders. However, the prospect of such genetic testing also raises serious ethical considerations.
Previous efforts to apply genetic screening to social policy resulted in significant adverse outcomes, for example, to carriers of the sickle cell trait. In addition, since some of these tests may be conducted in the workplace, they raise serious ethical considerations for practitioners of occupational and environmental medicine.
Although the application of genetic screening in the workplace has been limited to date, the ethical considerations of such testing in the workplace have been extensively examined. With the anticipated expansion of genetic testing engendered by the Human Genome Project, the Institute of Medicine of the National Academy of Sciences recently undertook a comprehensive review of the issues surrounding genetic testing, including those relevant to workplace screening. In fact, 3.5% of the total research budget for the project was set aside for the study of ethical, legal, and societal issues. The College fully endorses the conclusions of this report as applied to genetic testing in the workplace, including:
— the guiding ethical principles for such testing should be voluntary, informed consent and confidentiality with due respect for autonomy, equity, and privacy considerations of those tested;
— until extensively validated, such testing should be recognized as a form of human investigation and subject to the appropriate ethical controls;
— due consideration should be given to the quality of the testing and reliability of the results;
— caution should be exercised in the use and interpretation of pre-symptomatic and predictive tests;
— if performed, genetic testing should always be accompanied by appropriate genetic counseling.
Furthermore, ACOEM recognizes the greatest potential for the misuse of genetic testing in the workplace involves discrimination in employability or insurability. Therefore, the College endorses the following recommendations:
— Genetic testing should not be performed on current or prospective employees unless it is clear that the genetic trait directly affects job performance or if the trait being screened for predisposes a worker to a significant, consistent adverse outcome following an otherwise acceptable workplace exposure. If performed under these circumstances, employees should be informed of the testing, be able to participate on a voluntary basis, have the test results available upon request, and be guaranteed that test results will not be disclosed to others without their consent.
In accordance with the ACOEM Code of Ethical Conduct, specific test results should not be released to employers, but the disclosure of information derived from such testing should be limited to its impact on the employee’s fitness to perform a particular job.
— Insurability decisions of employees by employers or others should not be based on genetic status. Thus, genetic test results or the information on employability derived from genetic test results should not be used to make decisions on the issuance or pricing of health care insurance.
Source: American College of Occupational and Environmental Medicine, Elk Grove Village, IL.