Ethics in genetic research

Studies of genetic variation should be conducted in developing countries only after community consultation where identifiable leadership exists and with the individual consent. Studies of particular genetic diseases require the consent of the individual, community consultation may be appropriate, but should not pre-empt the interests of the individuals at risk. Gene therapy trials should not be conducted in the developing world, at least until such therapy becomes effective and relatively inexpensive. Results of genetic tests should be provided to subjects only if the test has been demonstrated to have sufficient clinical validity. Results should never be disclosed to relatives, except as may be unavoidable in the context of pedigree research. Policies regarding disclosure of test results should be included in the informed consent process.