Rethinking super-confidentiality in the age of disclosure: The ethical and social implications of privacy protections in mental health data

Summary Two opposing impulses have marked efforts in medicine and global health to combat stigma and discrimination. Traditionally, threat of stigma leads to efforts to protect patients by enforcing privacy and confidentiality, while more recently, anti-stigma efforts have been dominated by arguments that the best way to fight stigma is through greater disclosure of the facts of illness. By this line of argument, the act of sharing patient experiences with stigmatized conditions will help dismantle stigma. The question of whether and/or when the threat of stigma warrants more privacy or more disclosure in medicine and public health is the topic of this paper. Tracing two historical cases – HIV and mental health – illustrates the shifting pendulum between privacy and disclosure as opposing, yet both well-intentioned responses to the fact of stigma in both medicine and public health. Public health responses to both HIV and mental health can be divided into periods marked by exceptionalism that eventually yielded to calls for greater integration. That the opposite policies of both eras were each justified the same argument that combat stigma makes these historical cases ethically important. Tracing the rise and fall of exceptionalism in these two cases – HIV and mental health – raises both empirical and normative questions about the impulse toward greater privacy as a strategy for stigma protection. These questions include: When is greater privacy an appropriate or effective response to combat stigmatized conditions? Might greater privacy sometimes actually lead to perverse consequences such as exacerbating or perpetuating, rather than mitigating stigma? And if that is indeed a risk, how should public health officials determine in what circumstances disclosure or privacy offers a better strategy toward stigma reduction? This paper concludes by considering the normative aspects of the policy implications raised by such cases of privacy and anti-stigma efforts. These two cases enumerate the social and medical costs of privacy and stigma so that better policy prescriptions can be developed to advance fairness and justice. They should serve to remind or teach us that there may be social and ethical costs associated with the cure (the privacy) as well as the illness (the stigma). Policy responses must evolve with changing social circumstances. The original impulse towards extreme privacy, confidentiality or exceptionalism, noble though it was, and even appropriate for that time, does not today result in its intended goal: reduction of stigma by demonstrating through practice and policy the moral equivalence of different medical conditions. Another lesson from these cases is that in many cases extreme privacy and vertical programs may even detract from that goal of stigma reduction by signaling that the stigmatized condition is so “other” its sufferers require special treatment or to be kept apart (in the isolated clinics of HIV/AIDS for example). More protection will not always be benign, even if well intentioned. The ironic lesson for global health is that privacy practices run the risk of perpetuating the very stigma they were designed to combat.