As genetic tests to predict adult-onset disease have become increasingly available, concerns have intensified that there will be a shortage of knowledgeable providers who can effectively administer such tests and counsel patients.

This project surveyed HMO medical directors to determine the extent of requests and coverage for predictive genetic testing for three common adult-onset disorders and Huntington's disease (HD), and the types of arrangements HMOs have with genetics specialists. It also surveyed academic genetics units (AGUs) to determine what services they provide to HMOs and other types of managed care organizations (MCOs), and the experiences they have had with these MCOs.

Key Results

• The surveys found that HMOs are beginning to receive and provide coverage for requests for genetics tests for adult-onset disorders.
• Most provide tests through contractual arrangements with geneticists. Almost all of the AGUs provide pediatric and prenatal services.
• 76 percent provide testing and counseling for adult-onset disorders.
• Despite the existence of contractual relationships with MCOs, over 90 percent of the directors of AGUs reported difficulties providing services for patients enrolled in MCOs.
• In addition, in a separate study, the project evaluated educational materials on genetics testing produced by genetics testing organizations and found numerous deficiencies.

The project also convened a meeting of geneticists and representatives of MCOs to exchange views on incorporating genetic services into mainstream medicine.

• Participants saw new genetic technologies as having a great potential to improve health, but believed there are many problems to be surmounted. Findings have been published in the American Journal of Human Genetics.

Funding

The Robert Wood Johnson Foundation (RWJF) supported the project with a grant of $41,807 from January to December 1996.