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Re-envisioning community genetics: community empowerment in preventive genomics.

ABSTRACT: As genomic technologies rapidly develop, polygenic scores (PGS) are entering into a growing conversation on how to improve precision in public health and prevent chronic disease. While the integration of PGS into public health and clinical services raises potential benefits, it also introduces potential harms. In particular, there is a high level of uncertainty about how to incorporate PGS into clinical settings in a manner that is equitable, just, and aligned with the long-term goals of many healthcare systems to support person-centered and value-based care. This paper argues that any conversation about whether and how to design and implement PGS clinical services requires dynamic engagement with local communities, patients, and families. These parties often face the consequences, both positive and negative, of such uncertainties and should therefore drive clinical translation. As a collaborative effort between hospital stakeholders, community partners, and researchers, this paper describes a community-empowered co-design process for addressing uncertainty and making programmatic decisions about the implementation of PGS into clinical services. We provide a framework for others interested in designing clinical programs that are responsive to, and inclusive and respectful of, local communities.

SUBMITTER: Wand H

PROVIDER: S-EPMC9918397 | biostudies-literature | 2023 Feb

REPOSITORIES: biostudies-literature

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Re-envisioning community genetics: community empowerment in preventive genomics.

Wand Hannah H Martschenko Daphne O DO Smitherman Annamaria A Michelson Sheryl S Pun Ting T Witte John S JS Scott Stuart A SA Cho Mildred K MK Ashley Euan A EA

Journal of community genetics 20230211 5

As genomic technologies rapidly develop, polygenic scores (PGS) are entering into a growing conversation on how to improve precision in public health and prevent chronic disease. While the integration of PGS into public health and clinical services raises potential benefits, it also introduces potential harms. In particular, there is a high level of uncertainty about how to incorporate PGS into clinical settings in a manner that is equitable, just, and aligned with the long-term goals of many he ...[more]

PMID: 36765027

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Project description:BackgroundGenerally, there is unanimity about the value of community engagement in health-related research. There is also a growing tendency to view genetics and genomics research (GGR) as a special category of research, the conduct of which including community engagement (CE) as needing additional caution. One of the motivations of this study was to establish how differently if at all, we should think about CE in GGR.AimTo assess the perspectives of genetics and genomics researchers in Uganda on CE in GGR.MethodA cross-sectional qualitative study was conducted at Makerere University and Uganda Virus Research Institute. Twenty-five individuals participated, the majority being male (sixteen). Participants included nineteen genetics and genomics researchers (researchers and research coordinators), two CE officers, three nurses and one nursing counsellor. Data were collected using in-depth interviews and analyzed in a thematic manner using NVivo version 12 Plus.Study findingsThirteen of the respondents had conducted CE in their GGR in either a geographical and disease-specific community. Some respondents said CE principles are the same and there is no need for special consideration for CE in GGR. Others gave ethical issues in GGR that require special consideration for CE in such research and these were categorized into six themes: GGR is new to communities, Difficulty in communicating GGR by the researchers, Genes are shared in communities, Cultural sensitivities against GGR, Community attitude toward GGR, Some GGR studies take long to end, and Negotiation of research benefits. Special considerations for CE when conducting GGR were suggested and categorized into seven themes: creating awareness of GGR in communities, obtaining both community acceptance and individual consent, CE team composition, involve communities in solving GGR challenges, prolong CE in some GGR, develop guidelines for CE in GGR, and legal considerations on GGR.ConclusionGGR was characterized by special issues that require special CE considerations for such research.

Project description:BackgroundModels of utilization distribution in the form of partial differential equations have long contributed to our understanding of organismal space use patterns. In studies of infectious diseases, they are also being increasingly adopted in support of epidemic forecasting and scenario planning. However, as movement research shifts its focus towards large data collection and statistical modeling of movement trajectories, the development of such models has notably slowed.MethodsHere, we demonstrate the continued importance of modeling utilization distribution to predict variation in space-use patterns over time. We highlight the considerable, yet largely untapped, potential of such models, which have historically been limited by the steady-state assumption due to longstanding technical constraints. Now, by adapting existing computational tools primarily developed for material science and engineering, we can probe beyond the steady states and unlock from them a broad spectrum of complex, transient space-use dynamics. Our approach requires little experience in numerical analysis and is readily accessible to model practitioners in ecology and epidemiology across diverse systems where movement is a critical feature.ResultsWe illustrated our approach using a mix of canonical and novel case studies, covering topics from wildlife translocation to vaccine deployment. First, we revisited a classical model of canid territorial formation driven by scent-mediated conspecific avoidance. Transient space-use analysis uncovered previously hidden spatial dynamics that are ecologically informative. Next, we applied our approach to long-distance movement on realistic landscapes. Habitat and land-use heterogeneities markedly affected the transient space-use dynamics and short-term forecasts, even when the steady state remained unchanged, with direct implications for conservation management. Finally, we modeled transient space-use dynamics as both a response to and a driver of transient population dynamics. The importance of this interdependence was shown in the context of epidemiology, in a scenario where the movement of healthcare personnel is influenced by local outbreak conditions that are stochastically evolving.ConclusionsBy facilitating transient space-use analysis, our approach could lead to reevaluations of foundational ecological concepts such as home range and territory, replacing static with dynamic definitions that more accurately reflect biological realities. Furthermore, we contend that a growing interest in transient space-use dynamics, spurred by this work, could have transformative effects, stimulating new research avenues in ecology and epidemiology.

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Re-envisioning community genetics: community empowerment in preventive genomics.

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Re-envisioning community genetics: community empowerment in preventive genomics.

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