ArticleHealth expectations : an international journal of public participation in health care and health policy2022
Adapting a conceptual framework to engage diverse stakeholders in genomic/precision medicine research.
Article in Health expectations : an international journal of public participation in health care and health policy, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 14 papers.
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Who cites it
14 citing papers in PubMed, 15 citations in OpenAlex.
- "There's no representation": a qualitative study of attitudes and motivations towards genomic research participation among Australian South Asians.European journal of human genetics : EJHG · 2026Article
- Community perspectives on the return of research results and ownership of data and specimens for brain tumor genomic research.SSM. Qualitative research in health · 2026Article
- Stakeholder engagement in genetics research development in diverse urban communities in the Midwestern United States: process and considerations.Frontiers in medicine · 2026Article
- Mapping the state-of-the-art of the barriers for personalized preventive approaches worldwide: A scoping review of reviews.PloS one · 2025Article
- A qualitative study of diversity in precision medicine research: The development and stakeholder assessment of a Diversity Decision Map.Journal of clinical and translational science · 2025Article
- Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape.The Hastings Center report · 2024Article
- "I just don't know enough": Australian perspectives on community involvement in health and medical research.Research involvement and engagement · 2024Article
- Bridging the Divide: A Review on the Implementation of Personalized Cancer Medicine.Journal of personalized medicine · 2024Review
- Integrating participants as partners in research governance and operations: an approach from theBMJ open · 2023Review
- Beyond borders: A commentary on the benefit of promoting immigrant populations in genome-wide association studies.HGG advances · 2023Review
- How should communities be meaningfully engaged (if at all) when setting priorities for biomedical research? Perspectives from the biomedical research community.BMC medical ethics · 2023Article
- Precision Rehabilitation: Optimizing Function, Adding Value to Health Care.Archives of physical medicine and rehabilitation · 2022Article
- LGBTQ+ Perspectives on Conducting Genomic Research on Sexual Orientation and Gender Identity.Behavior genetics · 2022Article
- Adapting a conceptual framework to engage diverse stakeholders in genomic/precision medicine research.Health expectations : an international journal of public participation in health care and health policy · 2022Article
Corrections and comments
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Authors and funding
7 authors at 5 institutions in 1 country.
Funding
Abstract
introductionGenomic/precision medicine offers a remarkable opportunity to improve health and address health disparities. Genomic medicine is the study of genes and their interaction with health. Precision medicine is an approach to disease prevention and treatment that considers individual variability in genes, environment and lifestyle. Conclusions from studies lacking diversity may hinder generalizability as genomic variation occurs within and between populations. Historical factors, such as medical mistrust, ethical issues related to decision making, and data sharing pose complex challenges that may further widen inequities in genomic/precision medicine if not appropriately addressed. Although few biomedical studies integrate priorities of community partners into their conceptual framework, effective implementation of genomic/precision medicine research calls for the involvement of diverse stakeholders to expand traditional unidirectional models of engagement in clinical research towards authentic bidirectional collaboration.
methodsA multipronged approach was used integrating an evidence-based literature review and best practices in developing and evaluating the engagement of diverse stakeholders in genomic and precision medicine research. This was combined with expert consensus building to adapt a conceptual model from a community engagement framework to addressing genomics to be scalable to engagement science, which is challenging to genomic/precision medicine research.
resultsThe final enhanced conceptual framework is composed of four overarching dimensions now inclusive of domains in trust, exploitation, discrimination, privacy risk, stigmatization, prior harms/injustices, failure to recognize coexisting governments, intersectionality and research transformation. This conceptual framework proposes effective participant research engagement strategies for upstream relationship building, distinct from downstream recruitment strategies in which the goal is enrolment.
conclusionTo further shape the evolution of genomic/precision medicine research, it is important to leverage existing partnerships, engage participants beyond recruitment and embrace diverse perspectives. PATIENT OR PUBLIC CONTRIBUTION: In preparation of this manuscript, the perspectives of the community partners on the impact of engaging in genomic/precision medicine research beyond research participation were integrated into this conceptual framework from various guided listening sessions held in diverse communities.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.