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