ArticleJournal of behavioral medicine2017
Choosing not to undergo predictive genetic testing for hereditary colorectal cancer syndromes: expanding our understanding of decliners and declining.
Article in Journal of behavioral medicine, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 22 papers, 1 of them a synthesis that pooled it.
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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
22 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Preferences for Genetic Testing to Predict the Risk of Developing Hereditary Cancer: A Systematic Review of Discrete Choice Experiments.Medical decision making : an international journal of the Society for Medical Decision Making · 2024Pooled it
- A WeChat-Based Decision Aid Intervention to Promote Informed Decision-Making for Family Members Regarding the Genetic Testing of Patients With Colorectal Cancer: Randomized Controlled Trial.Journal of medical Internet research · 2025Trial
- Learning about the genetic risk in my family: Preferences of Italian nurses.Journal of community genetics · 2026Article
- Cancer genetic testing uptake in the primary care setting: Patient perspectives on barriers and facilitators throughout the testing process.Journal of genetic counseling · 2026Article
- Facilitators and Barriers to Uptake of Genetic and Cascade Testing in Familial Hypercholesterolemia: a Systematic Review.International journal of behavioral medicine · 2026Article
- Reasons for refusal of genetic testing in the evaluation of autism spectrum disorder and intellectual developmental disorder with longitudinal follow-up on test completion.Genetics in medicine open · 2026Article
- "Uninsurable because of a genetic test": a qualitative study of consumer views about the use of genetic test results in Australian life insurance.European journal of human genetics : EJHG · 2024Article
- Future implications of polygenic risk scores for life insurance underwriting.NPJ genomic medicine · 2024Review
- Health professionals' views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study.European journal of human genetics : EJHG · 2022Article
- Relatives from Hereditary Breast and Ovarian Cancer and Lynch Syndrome Families Forgoing Genetic Testing: Findings from the Swiss CASCADE Cohort.Journal of personalized medicine · 2022Article
- Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis.Journal of personalized medicine · 2022Article
- DRP1 contributes to head and neck cancer progression and induces glycolysis through modulated FOXM1/MMP12 axis.Molecular oncology · 2022Article
- Financial constraints on genetic counseling and further risk-management decisions among U.S. women at elevated breast cancer risk.Journal of genetic counseling · 2021Article
- Study protocol: the Australian genetics and life insurance moratorium-monitoring the effectiveness and response (A-GLIMMER) project.BMC medical ethics · 2021Article
- Novel methylated DNA markers accurately discriminate Lynch syndrome associated colorectal neoplasia.Epigenomics · 2020Article
- How the "control-fate continuum" helps explain the genetic testing decision-making process: a grounded theory study.European journal of human genetics : EJHG · 2020Article
- Genetic discrimination by Australian insurance companies: a survey of consumer experiences.European journal of human genetics : EJHG · 2020Article
- Disclosing genetic risk for Alzheimer's dementia to individuals with mild cognitive impairment.Alzheimer's & dementia (New York, N. Y.) · 2020Article
- Choosing not to know: accounts of non-engagement with pre-symptomatic testing for Machado-Joseph disease.European journal of human genetics : EJHG · 2019Article
- Discussions about predictive genetic testing for Lynch syndrome: the role of health professionals and families in decisions to decline.Familial cancer · 2018Article
Corrections and comments
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Authors and funding
6 authors.
Funding
Abstract
While medical research continues to investigate the genetic basis of cancer, and personalised prevention gains momentum, little research has been conducted with the individuals who decline predictive genetic testing for cancer. We recruited individuals who had been offered genetic testing for Lynch syndrome or bi-allelic MUTYH mutations due to their participation in a large, population-based, Australia-wide colorectal cancer study. Thirty-three individuals in mutation-carrying families, unaffected by cancer, who had actively or passively declined testing at one of four decision-making points, took part in a qualitative interview about their decision. Data analysis revealed a typology of 'decliners': (1) uninformed about genetic testing; (2) a weak intention to undergo genetic testing; (3) conditionally declining; and (4) unconditionally declining testing. In this population we found substantial barriers to achieving the benefits promised by predictive genetic testing; a lack of knowledge of the availability of genetic testing; a lack of trust in genetic test information; a desire to see a stronger benefit from genetic testing before proceeding; and a sense that there may be more negative than positive outcomes from genetic testing. These discourses must be addressed if medical research on the genetic basis of cancer continues to be funded, and personalised prevention of cancer continues to be recommended by experts.
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