The right to know and the right not to tell: the ethics of disclosure of HIV status

Abstract

Disclosure of HIV status has been considered an important public health issue for some 20 years. Yet the ethical issues surrounding the disclosure of positive HIV status have not been examined comprehensively. This report examines the ethics behind the disclosure of HIV-positive status primarily or individuals to their sex partners, and for health care practitioners to a patient’s sex partner when the patient is unwilling to disclose. Relevant rights and ethical principles are analysed, including the rights to: self-preservation; privacy and confidentiality; and the bioethical principles of respect for autonomy, beneficence, non-maleficence, and justice. Historic and contemporary individual rights that people living with HIV (PLHIV) have regarding disclosure are emphasised, especially in adverse circumstances, where ethics can support non-disclosure based on the right to selfpreservation. Rights declarations and current disclosure guidelines for health care practitioners from several international and South Africa medical organisations also are reviewed. Of key importance to disclosure decisions are the specific situations of individuals in climates rife with stigma toward, and discrimination against, PLHIV, existing more or less worldwide. The potential negative impacts of disclosure are the basis for disclosure decisions of PLHIV. Research study results show that the negative impacts of disclosure can be severe for individuals, ranging from divorce or abandonment to community ostracism and even to murder. Relevant current theories of social justice related to HIV disclosure also are discussed. A conclusion is reached that, by decreasing stigma and discrimination against PLHIV and protecting individual rights related to HIV disclosure, prevention behaviours will be practised more widely, including ‘positive prevention’ by PLHIV and higher rates of disclosure. The eventual result will be the longterm public health goal of decreased spread of HIV.