Genetics and public health: Informed consent beyond the clinical encounter

This chapter begins with a discussion of the barriers to adequate informed consent. It then presents examples that show how public health and genetics might come together, either in research or in clinical programs. The examples cover prenatal genetic screening, newborn screening programs, and the ways in which all genetics research inevitably involves families. It is argued that in designing modes of obtaining informed consent, explicit consideration must be given to the structural forces that may make truly informed consent difficult in each particular situation. Moreover, it must be realized that these structural forces have the potential to increase in importance and impact when coupled with any program that purports to have the public's health at stake.