Ethical Issues in HIV-related Social Network Research Involving Substance-Using Sexual Minorities at Risk for HIV

Some social network research (SNR) relies on individuals reporting information about network members, with network members not providing consent. We assess how substance-using sexual minorities at risk for HIV perceive the benefits and risks of SNR and the preferred processes for obtaining informed consent.

We conducted 20 qualitative interviews with adults who identified as people of color, were cisgender male and had sex with cisgender men, and reported using substances (<12 months) in San Diego, CA, USA. Participants were asked about perceived risks and benefits of SNR related to HIV, with differing levels of network information being collected. Participants compared the risks of SNR to risks in daily life and were asked about their preferred consent format. Interviews were recorded via zoom, transcribed, and analyzed using qualitative thematic analysis.

Participants were Latinx (84%), Black (10%), and 1 Filipino (5%), the median age was 31 years, and 25% of them reported previous research experience. Most viewed SNR favorably and less risky than daily life. Participants preferred study designs where network members are also recruited, as their consent was viewed as "community consent." Participants also felt that community benefits of HIV-related SNR research outweigh the risks. Opinions were mixed about providing identifying information in the context of reporting substance use. A combination of a video using "lay-language" visuals and a written consent format was preferred.

Perceived benefits of SNR to HIV prevention and care outweighed the risks, with concerns about providing last names. Researchers should assess whether the collection of last names is warranted.