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Sugarman J, Bollinger J, Agostini J, Weinfurt K, Geller G, Jose S, Hannah M, Edwards OW, Henry LM, Sanchez T
Impact of Disclosing to Patients the Use of Antiretroviral Resistance Testing Results for Molecular HIV Surveillance: A Randomized Experiment in 2 National Surveys
The Impact of Disclosing to Patients the use of Antiretroviral Resistance Testing Results for Molecular HIV Surveillance: Results from a Randomized Experiment in Two National Surveys
Jeremy Sugarman;
Juli Bollinger;
Jose Agostini;
Kevin Weinfurt;
Gail Geller;
Sheethal Jose;
Marissa Hannah;
O. Winslow Edwards;
Leslie Meltzer Henry;
Travis Sanchez
ABSTRACT
Background:
Molecular HIV surveillance (MHS) is used to help identify and respond to emerging HIV clusters. In the US, MHS relies on HIV gene sequences obtained from routine antiretroviral resistance testing (ARVRT). This raises ethical concerns, including the lack of consent for, and transparency surrounding, public health uses of these clinical data. Such concerns could have a chilling effect on the willingness of people living with HIV (PLWH) to agree to ARVRT when recommended by clinicians and jeopardize the utility of MHS-informed HIV prevention efforts.
Objective:
We conducted a randomized survey experiment examining the effect of clinician disclosure of public health uses of ARVRT results versus clinician nondisclosure and subsequent discovery of such uses on patient willingness to undergo a recommended ARVRT.
Methods:
Study participants were respondents to one of two national annual web-based surveys conducted in the US: The American Men’s Internet Survey (AMIS) and the Transgender Women’s Internet Survey and Testing (TWIST).
Results:
Overall, 4348 AMIS participants (n=2151 disclosure; n=2197 nondisclosure) and 3314 TWIST participants (n=1670 disclosure; n=1644 nondisclosure) completed survey items regarding the vignettes. The majority was willing to undergo ARVRT regardless of which vignette they saw (82.7%(AMIS)/80.8%(TWIST)) in the disclosure group; and 68%(AMIS)/68.45(TWIST)) in the nondisclosure group after later learning about public health uses of ARVRT results.
Conclusions:
The majority of respondents expressed willingness to undergo ARVRT even with disclosure of public health uses of these data, but willingness markedly decreased when learning about these uses after the fact highlighting the importance of transparency in MHS programs. Clinical Trial: n/a
Citation
Please cite as:
Sugarman J, Bollinger J, Agostini J, Weinfurt K, Geller G, Jose S, Hannah M, Edwards OW, Henry LM, Sanchez T
Impact of Disclosing to Patients the Use of Antiretroviral Resistance Testing Results for Molecular HIV Surveillance: A Randomized Experiment in 2 National Surveys