presenting patients with basic, self-paced genetics education and even by presenting possible decision options for consideration of patients.

The on-line AIDS bibliography could serve as one example of the use of computerized techniques to enhance public education for joint action by the ELSI program and the National Library of Medicine (NLM). NLM's program with the American College of Physicians (ACP), which provides access to NLM resources to ACP members, is another possible model. The system should include access to the recommendations and assessments of the proposed National Advisory Committee on Genetic Testing and its Working Group on Genetic Testing. The ELSI program should coordinate with professional genetics organizations and NLM to develop such a genetics education and dissemination program for interested health professionals (see Chapter 6). However, more research is needed to determine which tasks in genetics education and counseling can be appropriately accomplished using such techniques and to evaluate these techniques in various settings and populations.

Cost-Effectiveness Analysis of Genetic Testing

The original Institute of Medicine (IOM) request for funding for this study included, among the issues the committee might address, the cost-effectiveness and cost-benefit of genetic testing and screening. This is a murky and often arcane area where, unfortunately, more attention is usually paid to the cost side of the equation than to benefits or effectiveness—at least in these economically difficult times. It is difficult enough to apply these analytical constructs to technological innovations in medical practice, such as the model of quality of life factors in assessing medical interventions such as the artificial heart (Hogness and VanAntwerp, 1991). Genetic testing and screening, with its attendant social, legal, and ethical issues, increases the complexity of the analysis still further. The President's Commission (1983, p. 84) summed up these issues succinctly:

Cost-benefit analysis is most useful when the costs and benefits of the action under consideration are tangible, can be measured by a common unit of measurement, and can be known with certainty. These conditions are rarely satisfied in public policy situations and they can be particularly elusive in genetic screening and counseling programs. For example, cost-benefit calculations can accurately evaluate the worth of a projected prenatal screening program if the only costs measured are the financial outlays (that is, administering a screening and counseling program and performing abortions when defects are detected) and the benefits measured are the dollars that would have been spent on the care of affected children. But the calculations become both much more complex and much less accurate if an attempt is made to quantify the psychological ''costs" and "benefits" to screenees, their families, and society.

A more fundamental limitation on cost-benefit analysis is that in its simplest form it assumes that the governing moral value is to maximize the



The National Academies | 500 Fifth St. N.W. | Washington, D.C. 20001
Copyright © National Academy of Sciences. All rights reserved.
Terms of Use and Privacy Statement