Impure Hopes

2022 ◽  
Vol 28 (1) ◽  
pp. 29-53
Author(s):  
Eben Kirksey

Abstract The experiment in China that produced the world's first babies with “edited” DNA comes out of an international research program aimed at producing an HIV cure. An atmosphere of secrecy surrounded this experiment at the edge of the law. Volunteers who signed up for the experiment were HIV-positive tonzghi—gay and bisexual “comrades” already living with closely guarded secrets and conflicted desires. Impure hopes—a mix of heterosexual dreams about reproductive futurity and biotech speculation about an HIV cure—drove the research forward. Volunteers were caught between dreamworlds, harboring hopes that were not entirely their own. The story of these patients is tangled up with CRISPR, a fast and cheap tool for manipulating DNA that contains tantalizing promises of medical breakthroughs for innovators and investors. Speculation in the innovation economy produced an earlier gene-editing experiment in the United States that brought HIV-positive veterans of ACT UP together with biotechnology entrepreneurs. After achieving promising results, a fickle market pushed gene-editing enterprises away from HIV cure research. Building on earlier work about impure science, this article makes an argument against purity to consider the contours of hope in ethically compromised times. Hope demands ongoing articulation work. As powerful political and economic forces threaten to steal queer hopes or simply capitalize on them, it is important to make our own ethical, political, and discursive cuts—to selectively renew some articulations while breaking other connections.

PLoS ONE ◽  
2017 ◽  
Vol 12 (1) ◽  
pp. e0170112 ◽  
Author(s):  
Karine Dubé ◽  
Jeff Taylor ◽  
Laurie Sylla ◽  
David Evans ◽  
Lynda Dee ◽  
...  

2021 ◽  
Author(s):  
Karine Dubé ◽  
John Kanazawa ◽  
Hursch Patel ◽  
Michael Louella ◽  
Laurie Sylla ◽  
...  

Abstract Background: HIV cure research involving cell and gene therapy has intensified in recent years. There is a growing need to identify standards, safeguards, and protections to ensure cell and gene therapy HIV cure research remains ethical and acceptable to as many stakeholders as possible as it advances on a global scale.Methods: To elicit ethical and practical considerations to guide cell and gene therapy HIV cure research, we implemented a qualitative, in-depth interview study with three key stakeholder groups in the United States: 1) biomedical HIV cure researchers, 2) bioethicists, and 3) community stakeholders. Interviews were transcribed verbatim. We applied conventional content analysis focused on inductive reasoning to analyze the rich qualitative data and derive key ethical and practical considerations related to cell and gene therapy towards an HIV cure.Results: We interviewed 13 biomedical researchers, 5 community members, and 1 bioethicist. Informants generated considerations related to: perceived benefits of cell and gene therapy towards an HIV cure, perceived risks, considerations necessary to ensure an acceptable benefit/risk balance, cell and gene therapy strategies considered unacceptable, additional ethical considerations, considerations for first-in-human cell and gene therapy HIV cure trials. Informants also proposed important safeguards to developing cell and gene therapy approaches towards an HIV cure, such as the importance of mitigating off-target effects, mitigating risks associated with long-term duration of cell and gene therapy interventions, and mitigating risks of immune overreactions.Conclusion: Rapidly evolving cell and gene therapy towards an HIV cure is accompanied by a host of ethical and practical challenges. To minimize risks to potential participants and facilitate the translation of scientific advancements from the bench to the clinic, cell and gene therapy HIV cure research must be thoughtfully developed and implemented. To protect the public trust in cell and gene therapy HIV cure research, ethical and practical considerations should be periodically revisited and updated as the science continues to evolve.


2017 ◽  
Vol 13 (1) ◽  
pp. 3-17 ◽  
Author(s):  
Karine Dubé ◽  
Lynda Dee ◽  
David Evans ◽  
Laurie Sylla ◽  
Jeff Taylor ◽  
...  

Early-phase HIV cure research is conducted against a background of highly effective antiretroviral therapy, and involves risky interventions in individuals who enjoy an almost normal life expectancy. To explore perceptions of three ethical topics in the context of HIV cure research—(a) equipoise, (b) risk–benefit ratios, and (c) “otherwise healthy volunteers”—we conducted 36 in-depth interviews (IDIs) with three groups of purposively selected key informants: clinician-researchers ( n = 11), policy-makers and bioethicists ( n = 13), and people living with HIV (PLWHIV; n = 12). Our analysis revealed variability in perceptions of equipoise. Second, most key informants believed there was no clear measure of risk–benefit ratios in HIV cure research, due in part to the complexity of weighing (sometimes unknown) risks to participants and (sometimes speculative) benefits to science and society. Third, most clinician-researchers and policy-makers/bioethicists viewed potential HIV cure study participants as “otherwise healthy volunteers,” but this perception was not shared among PLWHIV in our study.


2021 ◽  
Vol 18 (1) ◽  
Author(s):  
Karine Dubé ◽  
John Kanazawa ◽  
Lynda Dee ◽  
Jeff Taylor ◽  
John A. Sauceda ◽  
...  

Abstract Background An increasing number of HIV cure trials involve combining multiple potentially curative interventions. Until now, considerations for designing and implementing complex combination HIV cure trials have not been thoroughly considered. Methods We used a purposive method to select key informants for our study. Informants included biomedical HIV cure researchers, regulators, policy makers, bioethicists, and community members. We used in-depth interviews to generate ethical and practical considerations to guide the design and implementation of combination HIV cure research. We analyzed the qualitative data using conventional content analysis focused on inductive reasoning. Results We interviewed 11 biomedical researchers, 4 community members, 2 regulators, 1 policy researcher, and 1 bioethicist. Informants generated considerations for designing and implementing combination interventions towards an HIV cure, focused on ethical aspects, as well as considerations to guide trial design, benefit/risk determinations, regulatory requirements, prioritization and sequencing and timing of interventions, among others. Informants also provided considerations related to combining specific HIV cure research modalities, such as broadly neutralizing antibodies (bNAbs), cell and gene modification products, latency-reversing agents and immune-based interventions. Finally, informants provided suggestions to ensure meaningful therapeutic improvements over standard antiretroviral therapy, overcome challenges of designing combination approaches, and engage communities around combination HIV cure research. Conclusion The increasing number of combination HIV cure trials brings with them a host of ethical and practical challenges. We hope our paper will inform meaningful stakeholder dialogue around the use of combinatorial HIV cure research approaches. To protect the public trust in HIV cure research, considerations should be periodically revisited and updated with key stakeholder input as the science continues to advance.


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