ADDENDUM: Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors

Goldman, Jill; Hahn, Susan; Catania, Jennifer Williamson; LaRusse-Eckert, S.; Butson, Melissa Barber; Rumbaugh, Malia; Strecker, Michelle N.; Roberts, J. Scott; Burke, Wylie; Mayeux, Richard; Bird, Thomas D.

doi:10.1038/s41436-019-0559-1

Cited by 4 publications

(2 citation statements)

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“…691, 2017; Committee Opinion No. 693, 2017; Goldman et al, 2019; Hampel et al, 2015; Ormond et al, 2021; Robson et al, 2015). Previous research demonstrated that pre‐test counseling lowered patient anxiety (Bowen et al, 2006; Pieterse et al, 2011; Roshanai et al, 2009) and increased patient understanding of the benefits and risks of genetic testing (Bowen et al, 2006; Brain et al, 2002).…”

Section: Introductionmentioning

confidence: 99%

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Comparison of genetic testing documentation between genetic counselors and non‐genetic counselors

Feldman

Nagaraj

Collins

et al. 2023

Journal of Genetic Counseling

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Implementation of genetic testing in healthcare increases, but access to, and number of, genetics providers remain scarce. This study analyzed the impact of genetic counselor (GC) involvement on frequency of documentation of pre-and post-test counseling of genetic testing between GCs and genetics providers (GPs), and GCs and non-genetics providers (NGPs). A retrospective chart review of 467 charts from patients who had genetic testing ordered between July 2016 and June 2018 at a primarily pediatric institution was conducted. GCs were involved for 223 charts (GC group), and not involved for 244 (non-GC group). The non-GC group was further stratified into patient charts with Genetics Providers (GP group) (n = 100) involved and those with Non-Genetics Providers (NGP group) (n = 144) involved. Categorical, binomial, pre-test variables (counseling, test description, results possibilities, insurance coverage, and cost) and categorical, binomial, post-test variables (results disclosure, family testing recommendations, recurrence risk, and provided resources) were collected and compared using Fisher's exact test (p < 0.005). With the exception of test description, documentation for all variables occurred more frequently in the GC group compared to the NGP group (all p < 0.001). Documentation for the majority of variables also occurred more frequently in the GC group compared to the GP group (p < 0.005), with the exceptions of overall pre-test counseling and family testing recommendations. GC involvement was associated with increased documentation of most pre-and post-test genetic counseling variables. With increased emphasis placed on transparency, accurateness, and access for patients of the EMR, in part due to the passage of the CARES Act, documentation should reflect the content of counseling provided. The cause of the documentation discrepancy identified may have differing effects on patient care and provider education.

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Section: Introductionmentioning

confidence: 99%

“…691, 2017;Committee Opinion No. 693, 2017;Goldman et al, 2019;Hampel et al, 2015;Ormond et al, 2021;Robson et al, 2015).…”

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Comparison of genetic testing documentation between genetic counselors and non‐genetic counselors

Feldman

Nagaraj

Collins

et al. 2023

Journal of Genetic Counseling

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Apolipoprotein E in Alzheimer’s disease trajectories and the next-generation clinical care pathway

Narasimhan,

Holtzman,

Apostolova

et al. 2024

Nat Neurosci

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Communicating and Using Dementia Risk Evidence

Rosen¹

2022

JAD

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Advances in biomarkers, genetics, and other data used as dementia risk evidence (DRE) are increasingly informing clinical diagnosis and management. The purpose of this Mini-Forum is to provide a solutions-based discussion of the ethical and legal gaps and practical questions about how to use and communicate these data. Investigators often use DRE in research. When participants ask for their personal results, investigators have concerns. Will data that was intended to study groups be valid for individuals? Will sharing data cause distress? Debates around sharing DRE became heated when blood-based amyloid tests and amyloid reducing drugs appeared poised to enable clinicians easily to identify people with elevated brain amyloid and reduce it with a drug. Such an approach would transform the traditional role of DRE from investigational to foundational; however, then the high costs, uncertain clinical benefits and risks of the therapy led to an urgent need for education to support clinical decision making. Further complicating DRE use are direct to consumer genetic testing and increasingly available biomarker testing. Withholding DRE becomes less feasible and public education around responsible use and understanding become vital. A critical answer to these legal and ethical issues is supporting education that clearly delineates known risks, benefits, and gaps in knowledge, and communication to promote understanding among researchers, clinicians, patients, and all stakeholders. This paper provides an overview and identifies general concepts and resource documents that support more informed discussions for individuals and interdisciplinary groups.

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ADDENDUM: Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors

Cited by 4 publications

References 1 publication

Comparison of genetic testing documentation between genetic counselors and non‐genetic counselors

Comparison of genetic testing documentation between genetic counselors and non‐genetic counselors

Apolipoprotein E in Alzheimer’s disease trajectories and the next-generation clinical care pathway

Communicating and Using Dementia Risk Evidence

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