DOE Human Genome Program Contractor-Grantee Workshop VIII
February 27-March 2, 2000  Santa Fe, NM

138. Confidentiality Concerns Raised by DNA-Based Tests in the Market-Driven Managed Care Setting

Jeroo S. Kotval, Kathleen Dalton, and Patricia Salkin

The University at Albany, State University of New York, Albany, NY

JSK03@health.state.ny.us

The United States has embarked on a unique experiment in the financing and delivery of health care through for-profit, market-driven Managed Care Organizations (MCOs). A relevant feature of these institutions is that they raise financial capital through stock offerings and are therefore beholden to investors for solvency, and accountable to them for their practices. Between 1981 and 1997 for-profit MCO enrollment grew from 12% of all MCO enrollees to 62% of all MCO enrollees. As market pressures intensify, increasing numbers of health plans are shifting to a for-profit status. Cost-controls are more vigorously pursued by such institutions because their survival depends on keeping their stock-holders satisfied. Genetic tests that provide information about future illnesses and their possible cost would be of great interest to such institutions. As the population ages and more persons seek insurance in the individual markets, underwriting of insurance will become an increasing concern.

Our study of data utilization in MCOs indicates the following: (1) MCOs have access to a full array of confidential medical information. (2) These data are indeed used for administrative and cost-containment purposes. (3) Current confidentiality practices are inadequate to protect existing medical data. (4) Not-for profit MCOs are engaged in the same practices as for-profits due to competition within the market. (5) As the industry consolidates, large data warehouses collect and analyze medical information from individual medical records for the purpose of better health care management but also for the purpose of controlling costs. (6) Segmentation in the market results in MCOs closing those businesses that they find unprofitable such as services to special needs populations, Medicaid and Medicare. (7) Existing laws are insufficient to protect individuals from uses of genetic information for purposes other than the provision of health care. (8) Policy options -- such as the right to bring action against MCOs -- do not give the average person control over discrimination by MCOs based on their genetic status.