Genetics and the interpersonal elaboration of ethics

Abstract

Confidentiality in genetic testing poses important ethical challenges to the current primacy of respect for autonomy and patient choice in health care. It also presents a challenge to approaches to decision-making emphasising the ethical importance of the consequences of health care decisions. In this paper a case is described in which respect for confidentiality calls both for disclosure and non-disclosure, and in which respect for patient autonomy and the demand to avoid causing harm each appear to call both for testing without consent, and testing only with consent. This creates problems not only for clinicians, families and patients, but also for those who propose clinical bioethics as a tool for the resolution of such dilemmas. In this paper I propose some practical ways in which ethical issues in clinical genetics and elsewhere, might be addressed. In particular I call for a closer relationship between ethics and communication in health care decision-making and describe an approach to the ethics consultation that places particular emphasis on the value of interpersonal deliberation in the search for moral understanding. I reach these conclusions through an analysis of the concept of 'moral development' in which I argue that the achievement of moral understanding is a necessarily intersubjective project elaborated by moral persons.