Action needed to address molecular HIV surveillance ethical concerns.

Abstract

There have been growing ethical concerns about the widespread use of HIV-related molecular epidemiological public health surveillance and research-or what has come to be known as molecular HIV surveillance. The varied concerns of the practice originate due to lack of informed consent, lack of demonstrated benefit for communities, potential for eroded patient care relationships leading to poor health outcomes, and potential implications for information sharing and findings which could increase stigmatization and other negative impacts in contexts where HIV, drug use, sex work, migration, and poverty are criminalized. As people living with HIV, lawyers, clinicians, and social scientists, we are part of the growing movement calling for critical and ethical attention to the practice of molecular HIV surveillance and the public health logic which underwrites the practice. We urge Canadian public health actors and researchers working with molecular surveillance data to heed global guidance and recommendations for culturally informed ethical practices, to engage community members in HIV surveillance programs, and to ensure that people living with HIV are provided appropriate consent processes for uses of secondary data analysis. Furthermore, we urge researchers and Research Ethics Boards to interrogate assumptions of impracticality in seeking subsequent consent to use persons' health information held in data repositories and explore new methods of informed consent.