ArticleJournal of clinical and translational science2021
Examining access to care in clinical genomic research and medicine: Experiences from the CSER Consortium.
Article in Journal of clinical and translational science, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 33 papers.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
33 citing papers in PubMed.
- Determinants of DNA-sequence-based Diagnostic Yield in the CSER Consortium.medRxiv : the preprint server for health sciences · 2026Article
- Equity-focused implementation to enhance access to rare disease genomic research and understand diverse perspectives.Genetics in medicine : official journal of the American College of Medical Genetics · 2026Article
- Patient and physician preferences for cancer panel testing in Japan: a best-worst scaling study.BMJ open · 2025Observational
- Covering medical care costs for participants in the eMERGE Network: Challenges for equity and implementation.Genetics in medicine : official journal of the American College of Medical Genetics · 2025Article
- Distributional Cost-Effectiveness Analysis in Genomic Medicine: Considerations for Addressing Health Equity.Value in health : the journal of the International Society for Pharmacoeconomics and Outcomes Research · 2025Article
- Genetic Test Utilization and Cost among Families of Children Evaluated for Genetic Conditions: An Analysis of USA Commercial Claims Data.Applied health economics and health policy · 2025Article
- The ENGAGE study: evaluation of a conversational virtual agent that provides tailored pre-test genetic education to cancer patients.Journal of cancer survivorship : research and practice · 2025Article
- Genomic sequencing: the case for equity of care in the era of personalized medicine.Pediatric research · 2025Review
- When families bridge the research-clinical divide: An exploration of values regarding cascade screening in genomic research.Genetics in medicine open · 2025Article
- Psychometric Properties of a Culturally Adapted Spanish Version of the Attitudes toward Genomics and Precision Medicine Instrument.Public health genomics · 2025Article
- Families' experiences accessing care after genomic sequencing in the pediatric cancer context: "It's just been a big juggle".Journal of genetic counseling · 2024Article
- Can Open Science Advance Health Justice? Genomic Research Dissemination in the Evolving Data-Sharing Landscape.The Hastings Center report · 2024Article
- Measuring perceived utility of genomic sequencing: Development and validation of the GENEtic Utility (GENE-U) scale for pediatric diagnostic testing.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Improving access to exome sequencing in a medically underserved population through the Texome Project.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Paving the path for implementation of clinical genomic sequencing globally: Are we ready?Health affairs scholar · 2024Article
- Equity Concerns Across Pediatric Research Recruitment: An Analysis of Research Staff Interviews.Academic pediatrics · 2024Article
- Article
- Feasibility of an electronic patient-facing cancer family history tool in medically underserved populations.Genetics in medicine open · 2024Article
- Clinically Indicated Genomic Sequencing of Children in Foster Care: Legal and Ethical Issues.The Journal of pediatrics · 2023Article
- Access to prenatal exome sequencing for fetal malformations: A qualitative landscape analysis in the US.Prenatal diagnosis · 2023Article
Corrections and comments
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Authors and funding
24 authors.
Funding
Abstract
introductionEnsuring equitable access to health care is a widely agreed-upon goal in medicine, yet access to care is a multidimensional concept that is difficult to measure. Although frameworks exist to evaluate access to care generally, the concept of "access to genomic medicine" is largely unexplored and a clear framework for studying and addressing major dimensions is lacking.
methodsComprised of seven clinical genomic research projects, the Clinical Sequencing Evidence-Generating Research consortium (CSER) presented opportunities to examine access to genomic medicine across diverse contexts. CSER emphasized engaging historically underrepresented and/or underserved populations. We used descriptive analysis of CSER participant survey data and qualitative case studies to explore anticipated and encountered access barriers and interventions to address them.
resultsCSER's enrolled population was largely lower income and racially and ethnically diverse, with many Spanish-preferring individuals. In surveys, less than a fifth (18.7%) of participants reported experiencing barriers to care. However, CSER project case studies revealed a more nuanced picture that highlighted the blurred boundary between access to genomic research and clinical care. Drawing on insights from CSER, we build on an existing framework to characterize the concept and dimensions of access to genomic medicine along with associated measures and improvement strategies.
conclusionsOur findings support adopting a broad conceptualization of access to care encompassing multiple dimensions, using mixed methods to study access issues, and investing in innovative improvement strategies. This conceptualization may inform clinical translation of other cutting-edge technologies and contribute to the promotion of equitable, effective, and efficient access to genomic medicine.
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