Risk assessment, risk perception and decision making about courses of action involving genetic risk: an overview of concepts and methods.

Developments in medical diagnostics and shifts in the ethics of human reproduction increasingly present prospective parents with deliberate choice problems involving possible child deficiencies. An adequate handling of such problems may be supported by explicit methodologies for judging risks and making decisions under uncertainty. The paper gives an overview of concepts, models and methods concerning risk analysis, risk perception and "good" decision making. Several different (stimulus) definitions of risk are presented, and it is shown that "perceived risk" (a response-defined concept) may be operationally measured at different levels of an organism's activity. Disputes on the meaning of probability statements are related to differences in the available information basis which may result from a combination of frequentistic/nonfrequentistic data about, and external/internal determination of possible consequences. After a listing of various notions of "acceptable risk", three different approaches towards making good decisions are discussed. The paper concludes with a summary and some suggestions for the improvement of genetic counseling procedures.