Accessing Genetic Knowledge: A Case for a Humanist Virtue Ethics

Abstract

This essay presents an ethical argument for the value of taking a theoretical perspective that privileges the particularities of individual lived experience over a priori categories of subjecthood. This argument is made through the examination of one practice – disclosure – among American patients who have recently been diagnosed with Huntington’s disease, a fatal genetic disorder. Disclosure is understood in this context as the expected sharing of a Huntington’s disease diagnosis by the patient with those close to her (primarily family). It is modeled on the practice in which a medical professional informs a patient of her diagnosis. Through advancing an account of disclosure that constitutes it as an ethically obligatory practice within the realm of bioethics, the essay demonstrates that a particular set of ethical priorities is assumed by insisting on the salience of disclosure in the lives of patients diagnosed with Huntington’s disease. Two case studies are presented to illustrate that patients’ lived experience in the wake of a Hunting ton’s disease diagnosis does not necessarily include disclosure as an ethically important practice.