tant counseling component. As discussed below, insurance reimbursement or other financing for genetic diagnosis, testing, and screening, and essential genetic counseling, is not generally available now in the United States.
Moreover, the committee heard testimony at its public forum that individuals whose insurance does cover some or all genetic services may be reluctant or unwilling to file claims for such services. They may fear that the information they seek might be used to evaluate and deny their future applications for health or life insurance coverage, or might lead to higher premiums or limited coverage. Because much coverage in the United States is employment based, people may also worry that their employer will have access to the information and use it (overtly or covertly) to discriminate against them (Fields and Shapiro, 1993).
Even the casual conversation of medical personnel, human resources staff, and others about genetic information may affect insurance coverage if such information is reflected in medical records or in the personnel system of self-insured companies. To avoid such impact on insurability, some genetic counselors report that they routinely advise their counselees not to seek insurance reimbursement because of the potential risk to future health and life insurance coverage for them and their families (OTA, 1992c). However, if the information is subsequently sent to primary care practitioners for follow-up care and entered in the patient's medical record, insurers may then have access to that information even if they did not reimburse for the test itself. Many people seeking genetic testing and/or genetic counseling now pay ''out-of-pocket" for such services, either because they do not have insurance coverage for such services, or because they fear the consequences of having such information known to their insurance companies or to others. To keep information about genetic testing from reaching insurers, physicians are sometimes being requested to set up separate patient records (as is now sometimes done for records of treatment for AIDS or mental disorders).
When people do pay out-of-pocket for genetic diagnosis and testing, they often pay a substantial sum, especially if the testing requires complex linkage analysis. The cost of complex family studies involving linkage analysis ranges from $500 to $4,000, depending in part on the number of tests and the size of the family. The person seeking the testing must be able to pay the full costs of the testing for all relatives, or the testing may not be performed.
Direct DNA testing of individuals can be considerably less expensive; such tests now cost from $50 to more than $900 per test. Future costs for DNA tests could be even lower with automation and more widespread testing, and costs of $50 to $150 for a panel of six or more DNA tests are now being discussed; however, patents and royalties resulting from the patenting and licensing of genes and gene products have the potential greatly to increase the cost of such testing, as has already occurred in DNA tests for cystic fibrosis (Beaudet, 1992). These cost estimates for direct DNA analysis do not include any of the costs of interpretation, education, and genetic counseling prior to and/or following direct DNA testing (see Chapter 4).