The following subtopics were discussed under Ethical Issues in Medical Genetics:
• Criteria for the Requirements and Timing of Genetic Screening and Testing.
There is no single federal regulation to govern screening in the United States, since screening and testing laws and regulations vary from state to state. Some states have mandatory screening, but in general the emphasis is on voluntary screening. Recently, considerable emphasis has been placed on nondirective counseling whereby physicians attempt to give patients facts about medical situations without suggesting one course of action over another.
In the United States the decision to screen relies on at least two norms: (1) Is treatment available for the disease that is being screened? (2) Will the diagnosis provide the basis for reproductive decision making? Recently the ability to test for multifactorial complex diseases has become technically feasible. But such testing is predictive in nature, and the disease may or may not emerge in the future. Also, the disease may be related to both genetics and environmental conditions. There is, therefore, a reluctance to mandate predictive screening.
In Iran screening technology is not as advanced, and there are fewer tests in use for genetic screening. Those that are available include Thalessemia and RHneg tests. Karyotyping is available on a limited basis for Downs syndrome or other chromosome abnormalities, and testing for Duchenne and for cystic fibrosis is also possible. As the number of tests available to Iranians increases, an important question is how to approach the cost/benefit analysis of deploying tests for diseases of limited burden or of low frequency. Similar to the situation in the United States, screening in Iran is done on a voluntary basis. The decisions to screen rely heavily upon the patient/physician relationship. Professional societies are beginning to develop guidelines for screening, especially the pediatric and obstetrician-gynecological societies. One important aspect related to genetic screening in Iran is that a woman may have an abortion if the fetus has congenital malformation and she is able to obtain permission from her doctor and from a judge.
• Education of Health Professionals and How They, in Turn, Educate the Public.
The American participants reported that it is often the medical societies and volunteer associations that have taken the lead to educate the