Medical Decision Making and the Previvor

Abstract

Genetic testing has led to the establishment of the concept of the "previvor": someone who is not yet sick, but who has a genetic predisposition to disease. The previvor experience demonstrates how the practice of medicine and medical decision making is evolving to render current law and policy increasingly inapplicable to modern medical practice. The introduction of previvorship to the medical landscape raises special issues for the physician-patient relationship and the legal doctrine of informed consent. It challenges some of the most basic assumptions underlying the doctrine, is representative of the doctrine's declining utility, and is illustrative of the need to transition to a shared decision-making model. Thus, we should begin to envision a legal doctrine that supports a robust shared decision-making approach to address individual preferences and values, the increasing complexity of risk/benefit assessment, and inherent (and sometimes irreducible) uncertainty. Such an approach should emphasize a new, more expansive, and inclusive model of illness.