Individuals who are not yet sick, but who have a genetic predisposition to disease, often identify as ‘previvors’: a combination of the terms ‘predisposition’ and ‘survivor’. The previvor experience challenges many of the traditional expectations related to the provision of medical care and individual decision making. This article is the first to define the term ‘previvor’ for the legal literature and the first to examine the role of law in previvor decision making. In essence, this project uses previvorship as a case study to demonstrate how the practice of medicine and medical decision making is evolving to render current law and policy increasingly inapplicable to modern medical practice. It concludes that the legal doctrine of informed consent is inappropriate to ensure adequate medical decision making, as exemplified by the previvor experience. The doctrine’s overemphasis on risk-based disclosures and its failure to address medical uncertainty is representative of the hazards of relying on the biomedical model of disease. Rather, we should begin to envision a legal doctrine that supports a robust shared decision making approach to truly address individual preferences and values, the increasing complexity of risk/benefit assessment, and inherent (and sometimes irreducible) uncertainty.
Gutmann Koch, Valerie, Previvors (February 23, 2021).