Informed consent for HIV phylogenetic research: a case study of individuals living with HIV in an urban area who were contacted for participation in an HIV study

Informed consent for HIV phylogenetic research: a case study of individuals living with HIV in an urban area who were contacted for participation in an HIV study
Abby E. Rudolph, Omar Martinez, Robin Davison, Chineye Brenda Amuchi
Ehquidad International Welfare Policies and Social Work Journal, 4 July 2020; 14
Open Access
Summary
Introduction: Phylogenetic analyzes can provide information on the dynamics of HIV transmission. National and state differences in HIV criminalization and disclosure laws and advances in next-generation sequencing could affect the study’s perceived risks. Methods: We present the study opt-out rates and the reasons provided during enrollment for a study conducted in Boston (6 / 2017-8 / 2018). Results: Of the 90 patients who came to participate, 45 did not consent to participate. Reasons for not participating included an unwillingness to discuss their HIV status, privacy and confidentiality concerns, disinterest and lack of time. Conclusions: Given the low participation rates and concerns related to HIV status disclosure, privacy and confidentiality, these questions remain (1) should informed consent be required for all phylogenetic analyzes, including anonymous information and surveillance data? (2) What additional steps can investigators take to protect people’s privacy, particularly in contexts where HIV is criminalized or there have been civil / criminal cases investigating HIV transmission? And (3) what role can community members play to minimize potential risks, particularly for the most marginalized? These questions require input from both researchers and community members living with HIV / AIDS.

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