Voice Beyond Choice: Hesitant Voice in Public Debates About Genetics in Health Care

The rise of genetic techniques presents a great promise as well as some difficult dilemma's about how genetics will affect the way we will be able to live our lives. For this reason, in many countries, public debates are organized to reflect upon the development of predictive medicine. In this essay we focus on economist A. Hirschman's work on “exit, voice and loyalty” to analyse and enrich these public debates. We first introduce Hirschman's triad of concepts and focus on the concept of “voice,” which refers to an institution's ability to allow clients to give feedback about products or services, and its ability to listen to the feedback given. We argue that voice is particularly important for the health care system in which predictive medicine is developing. Voice is crucial because how predictive medicine will become institutionalised is now in the process of becoming determined. However, in public debates about predictive medicine, voice tends to be reduced to providing people with the option of making a choice whether to use genetic techniques or not. We argue that this reduction of voice to choice is not very informative about predictive medicine and suggest an amendment of Hirschman's concept of voice, which we call “hesitant voice.” Hesitant voice attempts to be informative about the uncertainty people experience in addressing predictive medicine and topicalises the gradual, the embodied, the tentative character of voice in developing situations like that of predictive medicine.