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Assessing Genetic Risks: Implications for Health and Social Policy
ries currently provide as patient care from the investigational category. Thus, one additional barrier to insurance reimbursement would be reduced.
Recently, some laboratories began receiving insurance reimbursement, particularly those doing genetic testing for cancer. In addition, some patients have successfully challenged their insurer's initial refusal of payment. In a survey reported by the congressional Office of Technology Assessment (OTA, 1992b), about 40 percent of the patients were able to get their genetic test reimbursed after sending a letter from the testing laboratory to their insurer. Some patients report successfully obtaining third-party reimbursement for cystic fibrosis (CF) carrier screening, particularly during pregnancy (Bernhardt and Eierman, 1992). However, as discussed in Chapters 2 and 8, this may not be the ideal time for CF carrier testing.
PRIVATE SOURCES OF PAYMENT FOR GENETICS SERVICES
The majority of health insurance for the under-65 population in the United States is private health insurance, generally provided through employers (Fields and Shapiro, 1993).3 In the United States, private commercial health insurance is usually a private business enterprise, run on basic business principles of responsibility to shareholders to maintain profitability (Pokorsky, 1989). Ensuring profitability for private health insurance means providing insurance to as many people as possible, while containing outlays through a variety of methods, including limits on coverage, copayments, and deductibles. Such insurance is generally provided through indemnity plans that do not cover all services.
Many health maintenance organizations (HMOs) are not for profit, but they cannot continue to operate if their coverage decisions, "open-enrollment" policies, and other practices combine to produce a continuing deficit. In this sense, even the not-for-profit insurers and managed care providers are concerned with controlling losses to their plans through coverage determinations and policies. If state insurance regulation permits, HMOs and other managed care practices may impose limits on open-enrollment periods (e.g., just a few weeks a year when they accept anyone who applies for membership) and limits on outside referrals for specialty care. The latter may impact on genetics services, which—for the most part—are outside the usual specialty services found in managed care plans. Although genetic education and counseling are essential components of any genetic testing services (see Chapters 1, 4, and 6), genetic counseling and education are not likely to be explicitly reimbursed without changes in reimbursement policies.
Self-Insurance by Employers
An increasing number of U.S. employers have moved to self-insurance in recent years, because it gives them more control over benefit systems and health care costs, as well as tax advantages. Federal legislation (the Employee Retire-