Privacy and confidentiality considerations for collecting HIV risk network data among men who have sex with men and implications for constructing valid risk networks

Abstract

Studies aiming to construct risk networks have historically collected network members' names, demographic characteristics and relational data (i.e., type, strength, duration, frequency of interaction, and HIV-related risk behaviors between the pair). Due to difficulties in constructing risk networks stemming from partner anonymity and the use of nicknames, some studies also collect network members’ screen names, phone numbers, physical attributes, and scars/tattoos to assist with entity resolution. In-depth interviews with 20 men who have sex with men and transgender women in Kentucky assessed privacy/confidentiality concerns as well as accuracy/recall issues associated with providing these details. Most preferred providing alters’ nicknames/first names only or a first name with the first letter of the last name. Many perceived screen names, phone numbers, and scars/tattoos to be too personal/identifying. Willingness to provide more detailed information varied by relationship type/strength, which could influence the validity of the resulting network.