Descriptive and normative ethics: Class, context and confidentiality for mothers with HIV

Abstract

This descriptive analysis reports on how institutional imperatives and professional assessments define, constrain, and even override normative claims for confidentiality in health care for mothers with HIV/AIDS. The analysis draws upon interviews with seventy-two health, social work, administrative, research, and advocacy professionals who work with mothers and infants with HIV/AIDS in nine sites in the U.S. and Puerto Rico and upon three analytical focus groups involving multidisciplinary groups of practitioners, lawyers, social scientists, and ethicists. Decisions regarding confidentiality for mothers with HIV/AIDS are likely to be influenced by (1) the relative lack of authority over information flow granted by medical institutions and professionals to patients and (2) professionals' class-based assumptions about mothers' needs for confidentiality and the consequences of withholding or disclosing information. Two normative conclusions for confidentiality practice in health care are drawn from and rooted in the descriptive findings of the research. First, if confidentiality practice is to be an expression of patient autonomy and rights, according to the principles generally held in medical settings, patients' control over information must be increased. Second, to avoid discrimination in the practice of confidentiality, decisions should be based on individual circumstances, not stereotypical generalities about social class.