Few such data have been gathered. The 1989 Health and Human Services report of the National Commission on Orphan Diseases estimates that 20 million Americans suffer from approximately 5,000 rare genetic diseases. Yet there is no federal level mandate for reporting genetic diseases and few states require the reporting of these conditions. Categoric assignments are broad and group many syndromes under the same numerical assignment, thus losing valuable information on specific genetic diseases. The Centers for Disease Control are developing statistical models for generating comprehensive reports on genetic disorders.
Health insurance is considered a basic benefit by most workers.
In todays health insurance market, benefits are largely controlled by the customer - employers who are purchasing health benefits for their employees and by large groups looking for the best buy for their health care dollar. Group plans far outnumber individual insurance plans. Employers tend to choose the least expensive package which covers essential services. Genetic services are often considered superfluous, applicable only to a few group members and therefore, not a covered benefit. Health Maintenance Organizations tend to provide only those specialty medical services available within their own staff and rarely employ a medical geneticist or counselor.