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Opinion 2.137 - Ethical Issues in Carrier Screening of Genetic Disorders

All carrier testing must be voluntary, and informed consent from screened individuals is required. Confidentiality of results is to be maintained. Results of testing should not be disclosed to third parties without the explicit informed consent of the screened individual. Patients should be informed as to potential uses for the genetic information by third parties, and whether other ways of obtaining the information are available when appropriate.

Carrier testing should be available uniformly among the at-risk population being screened. One legitimate exception to this principle is the limitation of carrier testing to individuals of childbearing age. In pursuit of uniform access, physicians should not limit testing only to patients specifically requesting testing. If testing is offered to some patients, it should be offered to all patients within the same risk category.

The direction of future genetic screening tests should be determined by well-thought-out and well-coordinated social policy. Third parties, including insurance companies or employers, should not be permitted to discriminate against carriers of genetic disorders through policies which have the ultimate effect of influencing decisions about testing and reproduction. (IV, V)

Issued June 1994 based on the report "Ethical Issues in Carrier Screening for Cystic Fibrosis and Other Genetic Disorders," adopted June 1991.