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American Society for Experimental Neurotherapeutics Abstracts
August 2001

Identifying Individuals at Risk for Disease: Counseling, Ethical, and Legal Issues Over Testing

Arch Neurol. 2001;58(8):1316-1317. doi:

While modern genetic science has provided us with valuable therapeutic tools, we are still unsure of the most useful ways to think about, use, test, communicate, and apply these technologies to the real problems that confront patients. Genetic testing involves the manipulation and application of knowledge with great predictive power. While this knowledge can empower patients to take preventive measures, often the appropriate preventive measures are not clear, the risk can be communicated only in terms of percentages, and the test can put the patient potentially at risk for employment, insurance, or other forms of discrimination.

Genetic information is not "simple," in the sense of being factually uncomplicated, straightforward in its implications, and with a clearly demarcated option of medical management. In addition, it is not simple because genetic information is often not limited to the patient in question but has implications for other family members who may or may not want such information. The ethical and legal problems arising from genetic testing thus falls into 5 categories. First are the issues of appropriate and inappropriate uses of testing. Is the existence of a test always enough to make its use advisable, even if there seems no reasonable therapeutic response? Second are the issues of appropriate counseling, including the mandate that test results be given by professionals trained to offer counseling, the nature of the counseling session itself, and the existence of sufficient numbers of counselors to keep up with the testing demand. Third are the appropriate applications of tests, including such issues as testing minors. Fourth are the social and legal questions, such as whether genetic susceptibilities are risk factors that should be considered in setting insurance rates or whether tests should be used in the workplace. Fifth are the broader social issues, such as ethnic subgroup discrimination.