Bilateral prophylactic mastectomy as a transformative experience: is informed consent sufficient?

The concept of transformative experiences (TE) raises fundamental challenges for medical decision-making and autonomy. Transformative experiences alter a person's preferences, values, and self-understanding in ways that are epistemically inaccessible prior to the experience itself - making genuinely informed decision-making difficult to achieve. Yet such choices must be made in high-stakes medical contexts, such as bilateral prophylactic mastectomy (BPM): carriers of high-risk cancer genes are expected to provide informed consent under conditions of profound uncertainty. This has led some authors to conclude that autonomy itself and the standard of informed consent are undermined. This paper argues against that conclusion. We argue that linking the rationality of a choice to taking into account in advance post-decision preferences is not an adequate demand to determine whether TE decisions are meaningful. Rather, an important part of the normative value of these decisions lies in their being self-determined, in accordance with present preferences and tentative and almost necessarily deficient projections into the future of preferences and experiences. Moreover, we argue that it is possible in many cases to build bridges from present preferences to anticipating future preferences. Facilitating this bridge-building and strengthening a sense of self-determination should be at the center of shared decision-making in the case of medical interventions such as BPM. We make a number of suggestions on how this could be achieved.