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Specimen sharing for epidemic preparedness: Building a virtual biorepository system from local governance to global partnerships.

ABSTRACT: We present a framework for a federated, virtual biorepository system (VBS) with locally collected and managed specimens, as a 'global public good' model based on principles of equitable access and benefit sharing. The VBS is intended to facilitate timely access to biological specimens and associated data for outbreak-prone infectious diseases to accelerate the development and evaluation of diagnostics, assess vaccine efficacy, and to support surveillance and research needs. The VBS is aimed to be aligned with the WHO BioHub and other specimen sharing efforts as a force multiplier to meet the needs of strengthening global tools for countering epidemics. The purpose of our initial research is to lay the basis of the collaboration, management and principles of equitable sharing focused on low- and middle-income country partners. Here we report on surveys and interviews undertaken with biorepository-interested parties to better understand needs and barriers for specimen access and share examples from the ZIKAlliance partnership on the governance and operations of locally organized biorepositories.

SUBMITTER: Giri J

PROVIDER: S-EPMC10566708 | biostudies-literature | 2023

REPOSITORIES: biostudies-literature

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Specimen sharing for epidemic preparedness: Building a virtual biorepository system from local governance to global partnerships.

Giri Judith J Pezzi Laura L Cachay Rodrigo R Gèlvez Ramirez Rosa Margarita RM Tami Adriana A Bethencourt Sarah S Lozano Anyela A Gotuzzo Herencia José Eduardo JE Poje Julia J Jaenisch Thomas T Chu May M

PLOS global public health 20231011 10

We present a framework for a federated, virtual biorepository system (VBS) with locally collected and managed specimens, as a 'global public good' model based on principles of equitable access and benefit sharing. The VBS is intended to facilitate timely access to biological specimens and associated data for outbreak-prone infectious diseases to accelerate the development and evaluation of diagnostics, assess vaccine efficacy, and to support surveillance and research needs. The VBS is aimed to b ...[more]

PMID: 37819913

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Project description:ContextDisaster citizen is the use of scientific methods by the public to address preparedness, response, or recovery needs. Disaster citizen science applications with public health relevance are growing in academic and community sectors, but integration with public health emergency preparedness, response, and recovery (PHEPRR) agencies is limited.ObjectiveWe examined how local health departments (LHDs) and community-based organizations have used citizen science to build public health preparedness and response (PHEP) capabilities. The purpose of this study is to help LHDs make use of citizen science to support PHEPRR.DesignWe conducted semistructured telephone interviews (n = 55) with LHD, academic, and community representatives engaged or interested in citizen science. We used inductive and deductive methods to code and analyze interview transcripts.SettingUS and international community-based organizations and US LHDs.ParticipantsParticipants included 18 LHD representatives reflecting diversity in geographic regions and population sizes served and 31 disaster citizen science project leaders and 6 citizen science thought leaders.Main outcomesWe identified challenges LHDs and academic and community partners face in using citizen science for PHEPRR as well as strategies to facilitate implementation.ResultsAcademic and community-led disaster citizen science activities aligned with many PHEP capabilities including community preparedness, community recovery, public health surveillance and epidemiological investigation, and volunteer management. All participant groups discussed challenges related to resources, volunteer management, collaborations, research quality, and institutional acceptance of citizen science. The LHD representatives noted unique barriers due to legal and regulatory constraints and their role in using citizen science data to inform public health decisions. Strategies to increase institutional acceptance included enhancing policy support for citizen science, increasing volunteer management support, developing best practices for research quality, strengthening collaborations, and adopting lessons learned from relevant PHEPRR activities.ConclusionsThere are challenges to overcome in building PHEPRR capacity for disaster citizen science but also opportunities for LHDs to leverage the growing body of work, knowledge, and resources in academic and community sectors.

Project description:IntroductionParticipatory health research (PHR) as a research paradigm, guides the research process and strives to achieve positive change in society in the interest of people's health. In this scoping review, PHR will be used as an umbrella term considering a wide range of collaborative research approaches in the health context. PHR is conducted 'with' or 'by' those it intends to benefit, as opposed to 'on' and 'for' them. Their involvement throughout the research process seeks to shift power and decision-making from where they traditionally lay within academia toward community, patient and public end-users. Research cannot be truly participatory without concurrently addressing power dynamics within the partnership and power imbalances in decision making. Therefore, power sharing can be defined as a major factor in building effective academic-community collaborations. This scoping review aims to identify, clarify, and map existing literature on power and power sharing in PHR from both theoretical and practical perspectives. Specifically, we will explore how power is conceptualised throughout the literature, and how power and power sharing are applied and addressed in real-life PHR partnerships.Materials and methodsThis scoping review will be conducted in accordance with the guidelines outlined in the Joanna Briggs Institute (JBI) Reviewer's Manual. This scoping review will consider both empirical and non-empirical research that report on understanding power and power sharing in participatory health research partnerships. All appropriate studies will be retrieved from the following five electronic databases: PubMed, Scopus, Embase, PsycINFO, SocIndex. This review will be limited to articles published in English and from January 1998 to March 2024. As the scoping review aims to capture more than peer-reviewed and published literature, it will also include grey literature such as theses and dissertations, reports, conference proceedings, and editorials. Data from the included literature will be extracted based on the data extraction tool, defined in advance.Ethics and disseminationAs primary data will not be collected, ethical approval is not required to conduct the scoping review. The findings of this study will be disseminated through peer-reviewed publications.

Dataset Information

Specimen sharing for epidemic preparedness: Building a virtual biorepository system from local governance to global partnerships.

Publications

Specimen sharing for epidemic preparedness: Building a virtual biorepository system from local governance to global partnerships.

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