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As wastewater research and monitoring programs develop and evolve beyond SARS-CoV-2 to a wide range of possible pathogens (viruses, bacteria, and protozoa), one critical challenge is determining what information ought to be shared, with whom, and how.

Wastewater research and monitoring can provide early warning of the spread of known diseases of public health importance and inform public health responses, but it can also provide highly sensitive and potentially stigmatizing information, raising ethical, legal, and social implication (ELSI) considerations, including how to communicate information in a way that maximizes benefits and builds public trust while protecting privacy and avoiding the exacerbation of health inequities. EMPOWER is an innovative embedded ELSI research project that will directly impact the development and implementation of strategies for communicating information from a statewide wastewater research and monitoring program in Texas. This project will collect critical empirical data from stakeholders and engage diverse members of the community to identify and develop strategies to address the ELSI considerations of communicating information from public health research.

The objective of EMPOWER is to develop a strategy for responsible reporting of information from wastewater monitoring in the state of Texas that is feasible and reflects community members’ values and perspectives. We will collaborate with the Texas Epidemic Public Health Institute (TEPHI) Wastewater Consortium (TWC) and its Action Plan Working Group to achieve the following specific aims:

• In Aim 1, we will identify facilitators and barriers to results disclosure by conducting embedded ELSI research (participant observation) and interviews with the TEPHI Action Plan Working Group members and other stakeholders involved in the TWC.
• In Aim 2, we will assess community members’ perspectives about results disclosures by conducting community engagement studios across Texas and a statewide survey.
• In Aim 3, we will generate evidence-based recommendations for results disclosure and develop a communication platform for community members’ review and feedback.

Our overarching goal is to develop ethical guidelines for the dissemination of results from wastewater research and monitoring programs.

Supported by: R01ES036232, Grant funding from National Institutes of Health, National Institute of Environmental Health Science, Office of the Director, National Human Genome Research Institute

Project Personnel

Amy McGuire – mPI

Jennifer Deegan – mPI, UTHealth Houston

Faith Fletcher – Co-I

Christi Guerrini – Co-I

Mary Majumder – Co-I

Rosalia Guerrero – Community health worker, UTHealth Houston

Norah Crossnohere – Consultant, patient-centered outcomes researcher, Ohio State University

Shannon-Claire Barnes, Clinical research associate

Jill Robinson – Research manager

Eric Boerwinkle – Advisory committee chair, UTHealth Houston

Anthony Maresso – Advisory committee member

Cheryl Walker – Advisory committee member

The diversification of genomics research cohorts is a national priority intended to accelerate research and improve individualized prevention, treatment and care. Concrete, tailored strategies are needed to ethically engage various underrepresented populations to promote equitable access to genomic discovery and translation. One region of the U.S. in which such strategies are likely to be of particular importance is the rural South. U.S. residents in the rural South experience persistent health disparities; have limited knowledge about genetics and genomic science; are underrepresented in genomics research; and would likely benefit substantially from scientific advances in genomics. Importantly, the structurally embedded factors that hinder members of rural communities from accessing advances in health care—and ultimately perpetuate health inequities—might similarly impair widespread, informed, participation in genomics. However, the ethical, legal, and social implications (ELSI) of conducting genomics research with residents in the rural South are not well-understood. As such, there is a critical need to engage rural populations in the full spectrum of genomics research to establish strategies that reflect their unique values, preferences and priorities.

The overall goal of the study is to use stakeholder-engagement methods to inform evidence-based guidelines to promote equitable participation and partnership in genomic discovery and translation.

Supported by: National Human Genome Research Institute

The maternal health crisis in the US represents a well-documented yet under-addressed health injustice and therefore warrants the input and involvement of bioethicists to influence critical dialogue and advocate for equity-focused research, policy, and practices that improve maternal health outcomes. With the goal of responsibly identifying and analyzing health inequities—particularly those inequities that unjustly burden socially and medically underserved populations—this project seeks to inform a broader and bolder bioethics framework to help bioethicists systematically and deliberately respond to long-standing health inequities, including the rise in maternal deaths among Black women.

Funded by

Current estimates are that 57% of persons in the U.S. with HIV are suppressed, leaving 43% unsuppressed, including about 13% who are undiagnosed and 30% who have been diagnosed but are not currently suppressed. Identifying persons with unsuppressed HIV to link them to care and antiretroviral treatment is critical for improving health and reducing new infections. New epidemiologic tools that identify in real time communities with high amounts of circulating HIV may enhance efforts to reduce HIV transmission and substantially contribute to ending the HIV epidemic.

During the SARS-CoV-2 pandemic, we and others used “wastewater environmental virology” to monitor and respond to COVID. It uses viral capture and PCR detection of viral nucleic acid from wastewater collection sites to detect, quantify, and predict total SCV2 activity in time. We built a robust and mature wastewater sampling program for the Houston region that includes weekly assessment of 39 wastewater collection sites covering about 4 million residents.

Our recent preliminary data demonstrate that HIV can be quantified in wastewater. Wastewater testing is unbiased, comprehensive, real-time, quantitative, and not influenced by access to health care, stigma or denial. We hypothesize that our pioneering wastewater sampling program can be applied as a powerful new tool to identify geographic areas with a high active burden of HIV, reflecting substantial numbers of people with undiagnosed or untreated HIV infection. Resources can then be mobilized to these communities to enhance HIV outreach, testing, prevention and linkage to care.  

The specifics aims are:

• To develop a sensitive, reproducible, and streamlined wastewater HIV detection pipeline
• To develop epidemiologic model incorporating data from wastewater sampling as a novel and informative parameter along with routine surveillance data on HIV diagnoses and population data;
• To characterize and incorporate stakeholder preferences, priorities, and recommendations for engaging key community stakeholders in the HIV wastewater sampling program with consideration to the ethical, legal, social, and cultural contexts of individuals living in target neighborhoods
• To determine if delivering proven public health interventions to neighborhoods as directed by wastewater HIV data can reduce the wastewater VL and increase HIV diagnoses in those neighborhoods. 

Scholarship in Reproductive Ethics: Centering the Family Planning Needs, Preferences, and Lived Experiences of Marginalized Women- 2020 Change makers in Family Planning

The purpose is to leverage interdisciplinary training and leadership to:

• Collaborate with medically underserved communities by embracing them as valued research partners to promote equity in family planning research and outcomes
• Broaden family planning research models to include a reproductive ethics framework that gives attention to the ways in which institutions and policies systematically marginalize groups and minimize informed decision making in family planning.

Supported By: Society of Family Planning Research Fund

Publications

Fletcher FE, Amutah-Onukagha N, Attys J, Rice WS. How Can the Experiences of Black Women Living With HIV Inform Equitable and Respectful Reproductive Health Care Delivery? AMA J Ethics. 2021 Feb 1;23(2):E156-165. doi: 10.1001/amajethics.2021.156. PMID: 33635196.