ArticleGenetics in medicine : official journal of the American College of Medical Genetics2015
Development of a tiered and binned genetic counseling model for informed consent in the era of multiplex testing for cancer susceptibility.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2015. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 53 papers, 1 of them a synthesis that pooled it.
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Who cites it
53 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Collaborative Group of the Americas on Inherited Gastrointestinal Cancer Position statement on multigene panel testing for patients with colorectal cancer and/or polyposis.Familial cancer · 2020Guideline
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- Trial
- Randomized study of remote telehealth genetic services versus usual care in oncology practices without genetic counselors.Cancer medicine · 2021Trial
- A randomized experimental study to test the effects of discussing uncertainty during cancer genetic counseling: different strategies, different outcomes?European journal of human genetics : EJHG · 2021Trial
- Research participants' experiences with return of genetic research results and preferences for web-based alternatives.Molecular genetics & genomic medicine · 2019Trial
- Preferences for in-person disclosure: Patients declining telephone disclosure characteristics and outcomes in the multicenter Communication Of GENetic Test Results by Telephone study.Clinical genetics · 2019Trial
- Randomized Noninferiority Trial of Telephone vs In-Person Disclosure of Germline Cancer Genetic Test Results.Journal of the National Cancer Institute · 2018Trial
- Patient Perceptions of Telephone vs. In-Person BRCA1/BRCA2 Genetic Counseling.Journal of genetic counseling · 2016Trial
- Disclosure of onset-predictive biomarker results to research participants at risk of genetic frontotemporal dementia: a European perspective.Alzheimer's research & therapy · 2025Review
- Parental decision making regarding level of newborn screening participation in the homebirth setting.Journal of community genetics · 2025Article
- Quality of Life in Adult Individuals Living With or at Risk of a Hereditary Cancer Predisposition Syndrome: A Scoping Review of the Qualitative Literature.Cancer medicine · 2025Article
- Developing the MyCancerGene Digital Health Portal to Improve Patients' Understanding of Germline Cancer Genetic Test Results: Development, User, and Usability Testing Study.JMIR formative research · 2025Article
- Genetic counselors' and community clinicians' implementation and perceived barriers to informed consent during pre-test counseling for hereditary cancer risk.Journal of genetic counseling · 2025Article
- Telephone versus in-person genetic counseling for hereditary cancer risk: Patient predictors of differential outcomes.Journal of telemedicine and telecare · 2024Article
- Understanding communication between patients and healthcare professionals regarding comprehensive biomarker testing in precision oncology: A scoping review.Cancer medicine · 2024Article
- Parents' expectations, preferences, and recall of germline findings in a childhood cancer precision medicine trial.Cancer · 2023Article
- Uptake of Genetic Research Results and Patient-Reported Outcomes With Return of Results Incorporating Web-Based Predisclosure Education.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2023Article
- Article
- Summary of the experiences, knowledge, medical management, and family communication of monoallelic MUTYH carriers.Journal of genetic counseling · 2023Article
Corrections and comments
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Authors and funding
31 authors.
Funding
Abstract
purposeMultiplex genetic testing, including both moderate- and high-penetrance genes for cancer susceptibility, is associated with greater uncertainty than traditional testing, presenting challenges to informed consent and genetic counseling. We sought to develop a new model for informed consent and genetic counseling for four ongoing studies.
methodsDrawing from professional guidelines, literature, conceptual frameworks, and clinical experience, a multidisciplinary group developed a tiered-binned genetic counseling approach proposed to facilitate informed consent and improve outcomes of cancer susceptibility multiplex testing.
resultsIn this model, tier 1 "indispensable" information is presented to all patients. More specific tier 2 information is provided to support variable informational needs among diverse patient populations. Clinically relevant information is "binned" into groups to minimize information overload, support informed decision making, and facilitate adaptive responses to testing. Seven essential elements of informed consent are provided to address the unique limitations, risks, and uncertainties of multiplex testing.
conclusionA tiered-binned model for informed consent and genetic counseling has the potential to address the challenges of multiplex testing for cancer susceptibility and to support informed decision making and adaptive responses to testing. Future prospective studies including patient-reported outcomes are needed to inform how to best incorporate multiplex testing for cancer susceptibility into clinical practice.Genet Med 17 6, 485-492.
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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.