Correction: Opportunities to implement a sustainable genomic medicine program: lessons learned from the IGNITE Network

Levy, Kenneth D.; Blake, Kathryn; Fletcher-Hoppe, Colette; Franciosi, James P.; Goto, Daisuke; Hicks, J. Kevin; Holmes, Ann M.; Kanuri, Sri Harsha; Madden, Ebony; Musty, Michael; Orlando, Lori A.; Pratt, Victoria M.; Ramos, Michelle; Wu, R. Ryanne; Ginsburg, Geoffrey S.

doi:10.1038/s41436-018-0280-5

Cited by 2 publications

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“…As noted, in this survey, we did not inquire whether reimbursement was received by IGNITE member sites when laboratories billed third party payers. Previous studies [8] have shown the importance of reimbursement for implementation and sustainability of genomic testing.…”

Section: Discussionmentioning

confidence: 99%

“…7 National Human Genome Research Institute, Bethesda, MD, USA. 8 Mission Health, Fullerton Genetics Center, Ashville, North Carolina, USA. 9 Nemours Children's Specialty Care, Jacksonville, Florida, USA.…”

Section: Acknowledgementsmentioning

confidence: 99%

“…As we approach 2020, the use of pharmacogenomic testing has yet to attain the clinical adoption envisioned by Collins. Although many pharmacogenetic tests have been technically and clinically validated [5], there continues to be numerous barriers hindering the implementation and adoption of genomic testing [6][7][8].…”

Section: Introductionmentioning

confidence: 99%

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Translating pharmacogenetics from research to routine clinical practice – a survey of the IGNITE Network

Levy

Goto

et al. 2020

transl med commun

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Background Translating pharmacogenetic research findings that have shown clinical efficacy into sustainable, routine clinical care at the institutional level requires strong evidence of improved patient outcomes bolstered by equitable reimbursement and a sound financial analysis. Although extensive research on the clinical value of pharmacogenetics has been completed, adoption into clinical practice lags due to a lack of evidence of clinical effectiveness and limited reimbursement. Methods The Sustainability Working Group within the NHGRI IGNITE I Network conducted an online survey of funded and non-funded IGNITE members to determine which genes they are researching, which have been translated into clinical practice, and how tests are billed. Data from the online surveys was consolidated and analyzed with results being tabulated for key findings. Due to the limited sample size, statistical analysis was forgone and results should be considered directional in nature. Results Fifteen out of twenty (75%) online survey responses were received and analyzed from IGNITE member sites delivering clinical care. Forty different genes were identified as being used for either research or clinical care. Thirty-two different genes were reported as being used clinically, an average of 6.9 genes were reported per site. Twenty-two and twenty-one genes were reported as being billed to third party payers or patients respectively. Although the survey did not ask whether sites submitting for reimbursement received payment, Medicare and Medicaid only reimburse for 6 of the 40 (15%) genes being tested. Of the 40 genes, 18 are rated by CPIC as having A/B level of evidence with the remainder being rated as C/D or having no rating. Approximately 32% more A/B rated genes were being reported clinically than non-A/B. Conclusion Adoption of pharmacogenetic testing continues to lag even at sites where leading experts conduct research and have the capability to report tests clinically. Clinical research that supports CPIC A level of evidence is important for provider and payer support. Adoption of pharmacogentic testing must also be justified financially, reimbursement is one key factor, and more health economic studies are needed in order to capture the value created by preventing drug-gene adverse events, emergency room visits, and hospitalizations.

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Section: Discussionmentioning

confidence: 99%

Section: Acknowledgementsmentioning

confidence: 99%

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Translating pharmacogenetics from research to routine clinical practice – a survey of the IGNITE Network

Levy

Goto

et al. 2020

transl med commun

Self Cite

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Stakeholders’ Interest and Attitudes toward Genomic Medicine and Pharmacogenomics Implementation in the United Arab Emirates: A Qualitative Study

Rahma

Elbarazi

Ali

et al. 2021

Public Health Genomics

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Background and Aim: Mapping the power, interest, and stance of stakeholders is a cornerstone for genomic medicine implementation. In this study, we aimed at mapping the power/interest of various stakeholders in United Arab Emirates (UAE) and exploring their attitudes toward pressing health genomics aspects. The overarching aim of this study is to facilitate the construction of a road map for the full implementation of genomic medicine and pharmacogenomics in the UAE with potential applicability to many healthcare systems around the world. Methods: A qualitative approach using in-depth interview was employed. Heterogeneous stakeholders were identified by experts in the field. The analysis of the data was a hybrid of deductive and inductive approach using NVivo software for coding and analysis. Results: 13 interviews were conducted. Following mapping the Mendelow’s matrix, we categorized the stakeholders in UAE to promoter, latent, defender, and apathetic. Most of the interviewed stakeholders emphasized the clinical demand for genomic medicine in UAE. However, many of them were less inclined to articulate the need for pharmacogenomics at the moment. The majority of stakeholders in UAE were in favor of building infrastructure for better genetic services in the country. Stakeholder from an insurance sector had contradicting stance about the cost-effectiveness of genomic medicine; the majority were concerned with the legal and ethical aspects of genomic medicine and had an opposing stance on direct-to-consumer kits. Conclusions: Implementing the Mendelow’s model will allow the systematic strategy for implementing genomic medicine in UAE. This can be achieved by engaging the key players (promoters and defenders) as well as engaging and satisfying the latent stakeholder.

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Correction: Opportunities to implement a sustainable genomic medicine program: lessons learned from the IGNITE Network

Abstract: The original version of this Article contained an error in the spelling of the author Geoffrey S. Ginsburg, which was incorrectly given as Geoffrey Ginsburg. This has now been corrected in both the PDF and HTML versions of the Article.

Cited by 2 publications

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Translating pharmacogenetics from research to routine clinical practice – a survey of the IGNITE Network

Translating pharmacogenetics from research to routine clinical practice – a survey of the IGNITE Network

Stakeholders’ Interest and Attitudes toward Genomic Medicine and Pharmacogenomics Implementation in the United Arab Emirates: A Qualitative Study

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