AS SCIENTISTS race to construct a complete map of the human genome—and as the number of genetic tests for inherited diseases grows—ethicists are struggling to create guidelines that address who should have access to and control of human genetic material and information.
Soon to weigh in on the subject is an international group of ethicists convened by the Human Genome Organization (HUGO) who will address such thorny issues as whether close relatives of patients should have access to stored patient DNA and under what circumstances researchers may use samples of blood or other human tissues routinely obtained during medical care.
The issue of access to and control of DNA samples and genetic information is a controversial one, as advocates of patient privacy seek stringent restrictions on the collection, storage, and oversight of tissue samples while scientists charge that such restrictions would seriously hinder biomedical research (JAMA. . . [Full Text of this Article]
