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Genethics: The Ethical and Legal Side of Referral for Genetic Testing and Counselling

 

David Kaplan, MSc(HA)
Joint Centre for Bioethics
Faculty of Medicine, University of Toronto

As the international quest to map and sequence the entire human genome continues, myriad medi-cal conditions of a genetic origin will be recognized, and tests to identify individuals at risk for these conditions will become available. An enormous amount of medical information can be gleaned from testing a person's genetic material. Health care providers could use this information to predict, and possibly prevent, future disability and disease. For over a decade, physicians have referred patients for genetic testing. In the early part of the last decade, this testing was often done without proper counselling. Numerous questions should be considered before referring an individual for genetic counselling and testing. Which patients should be sent for genetic testing and for which diseases should testing be available? Do traditional ethical and legal concepts of patient confidentiality, consent and disclosure apply to genetic information in the same manner as they apply to a patient's medical history? Are physicians liable for negligent counselling on the part of a non-physician genetic counsellor? This paper will highlight the ethical issues and legal implications of referring adult patients for genetic testing and counselling.