Balancing public health and privacy rights: a mixed-methods study on disclosure obligations of people living with HIV to their partners in China

Abstract

Abstract Background In 2021, a Chinese court, based on the newly enacted Civil Code, first revoked a marriage license due to the spouse’s failure to disclose their HIV infection before the marriage. This landmark case ignited a fresh debate on whether people living with HIV (PLHIV) have a legal duty to inform their spouses and sexual partners. Advances in medicine have partially isolated HIV transmission from sexual contact, extending the legal basis for the obligation to disclose beyond disease prevention. This study investigates some possibly unforeseen challenges for PLHIV in China to fulfill this duty, and the outcomes of their decisions in light of the government’s goal to promote health. Methods This study aims to provide a detailed examination of the legal provisions and practices concerning partner notification among PLHIV in China. A mixed-methods research approach was employed between 2019 and 2020, combining questionnaire surveys, in-depth interviews, and participatory observations. A total of 433 valid responses were obtained through a questionnaire posted on a Chinese online platform for PLHIV. Following the collection and random coding of the questionnaire data, 40 individuals living with HIV were selected for in-depth interviews. Subsequently, a six-month field investigation was conducted in Guan ai jia yuan (Caring Home) in Jinhua City to further explore this issue. Results A considerable proportion of PLHIV exhibit a high rate of disclosure to their spouses (nearly 80%). In the context of sexual partners, 56% of PLHIV stated that their sexual partners were aware of their HIV infection. Whether married PLHIV disclosing to their spouses or unmarried/divorced PLHIV disclosing to sexual partners, however, a substantial majority expressed apprehension about the potential disruption to their relationships that the disclosure might cause. The sole exception was observed among married PLHIV in extramarital relationships who demonstrated a slightly diminished level of concern in this context. Reasons for non-disclosure predominantly included undetectable viral load and the adoption of protective measures. Discussion This study reveals that a prevailing “HIV stigma” hinders PLHIV from voluntarily fulfilling the disclosure duties bestowed by Article 38 of the Regulations on the Prevention and Control of HIV/AIDS, and the unclear legal provisions of the new Civil Code play a significant role in this regard. Addressing this issue necessitates not only increasing societal tolerance toward PLHIV and reducing instances of social exclusion but also shifting the legal basis of disclosure duties from disease prevention to rights and obligations within the legal relationships of the parties involved. When it comes to the recipients of disclosure, for instance, it is crucial to differentiate between spouses and sexual partners. As for PLHIV failing to fulfill their disclosure duties, apart from interventions involving indirect notifications, the addition of further legal responsibilities may not be advisable. Intentional transmission actions, on the other hand, should still be subject to severe penalties. Clinical trial number: Not applicable.

Keywords

• HIV disclosure obligation
• Privacy rights
• HIV stigma
• PLHIV
• China