Molecular epidemiology: principles and practices. Schulte PA, Perera FP, eds. San Diego, CA: Academic Press, 1993 Apr; :235-250
Practitioners of molecular epidemiology are likely to be of laboratory or epidemiologic disciplines. In neither case are they likely to be trained in effective epidemiologic disciplines. In neither case are they likely to be trained in effective risk communication procedures; indeed they may not even relish such actions. Nonetheless, as in all epidemiology, molecular epidemiology is a part of public health. Thus, it is a discipline that involves human subjects and is targeted directly to making a difference in the health of populations. Hence, molecular epidemiologists must be able to interpret and communicate their results with some proficiency. The interpretation and communication of molecular epidemiologic results is the responsibility of researchers. It begins with the recruitment of subjects. Patients and research subjects have a right to give informed consent when participating in molecular epidemiologic research. The Nuremberg Code and the Helsinki Convention affirm and reaffirm the right of an individual to be given full disclosure about potential risks and benefits of experimental biomedical procedures (Duncan et al., 1977). These principles might be extended to cases in which researchers have information about potential health risks within identifiable populations (National Commission, 1978; Schulte and Ringen, 1984; Gordis, 1991; Lerman et al., 1991; Schulte, 1991). In these situations, subjects may be able to claim a "right to know" assay and study results. This "right" is based on the view that the right to selfˇdetermination is a fundamental democratic principle. In this context, individuals are considered best able to protect their health, lives, and interests if they are informed about a known risk. When the meaning of molecular epidemiologic information is uncertain, the required actions are less defined and more of a problem exists in communication of the information. Issues pertaining to the interpretation and communication of molecular epidemiologic information are discussed in this chapter.