erated the adoption of some genetic tests and may induce physicians to adopt tests whose limitations are unclear to them. The committee would hope that prospective standard setting—and making physicians aware of such standards—will reduce the chance of poor practices and, consequently, of liability suits.
The committee believes that the standard is for offering the test, not actually providing it, and that no genetic test should be done without the consent of the persons being tested or, in the case of newborns, the consent of their parents, as discussed below and in depth in Chapter 8.
The committee strongly supports continued attention to scientific, ethical, legal, and social issues in genetics at all levels. The committee sees a particular need for advisory bodies—with grass roots consumer representatives—to guide state health departments or legislatures on such issues as deciding when tests should be added to state-run screening programs and to ensure that the offering, testing, and associated education and counseling are always conducted in accord with the principles suggested in this report. The committee also sees the need for continuing national oversight for the evaluation of existing and new genetic tests, and of pilot projects for the use of such tests, to help states decide what tests to adopt, to advise federal agencies with responsibilities related to genetic testing, and to provide broad policy advice on genetic testing (see Chapter 9 for the committee's recommendations).
The optimal age for testing depends on the aims of the test. If the test is performed for disease management, the time to test is sometime before the age at which treatment must be started in order to be effective. If the test is performed for reproductive counseling, the time to test is when reproduction is being considered.
(summarized from NAS, 1975)
The committee agrees with this principle: there is little point, and possibly some harm, to testing at an age earlier than necessary to prevent irreversible damage. For instance, at the moment, there is considerable controversy about screening children for hypercholesterolemia. It is not clear that screening per se, or even lowering of cholesterol in children, is without harmful effects (Holtzman, 1992). Nor is it clear that lowering cholesterol in childhood confers any additional benefit of reducing the risk of future coronary artery disease over lowering cholesterol in early adulthood. However, getting accustomed to a prudent diet relatively early may be an advantage.
The committee rejects the assertion that the timing of screening should be determined primarily by when people come for health care and much prefers reform in the health care system to improve access so that many more people will come for care at optimal times. Because many women who contemplate pregnan-