ArticleJournal of personalized medicine2021
Patient and Family Preferences on Health System-Led Direct Contact for Cascade Screening.
Article in Journal of personalized medicine, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 28 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
28 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Public perspectives on healthcare professional-directed communication of hereditary genetic risks: a mixed-method systematic review.European journal of human genetics : EJHG · 2026Pooled it
- Cascade Testing for Hereditary Cancer Syndromes: Should We Move Toward Direct Relative Contact? A Systematic Review and Meta-Analysis.Journal of clinical oncology : official journal of the American Society of Clinical Oncology · 2022Pooled it
- Patients' perceptions and practices of informing relatives: a qualitative study within a randomised trial on healthcare-assisted risk disclosure.European journal of human genetics : EJHG · 2024Trial
- Why is family disclosure of genetic risk so difficult? A collaborative analysis of 685 rare-disease patient experiences.European journal of human genetics : EJHG · 2026Article
- Public attitudes toward cascade genetic screening in the United States.Health affairs scholar · 2026Article
- Family Leaders Navigate Burden to Communicate Risk during Cascade Screening after Sudden Cardiac Death in the Young.Public health genomics · 2026Article
- "Would you want to know?" Questions of utility and responsibility in Italian laypersons' preferences about genetic risk communication.Journal of community genetics · 2025Article
- A Multi-Level Analysis of Barriers and Promoting Factors to Cascade Screening Uptake Among Male Relatives of BRCA1/2 Carriers: A Qualitative Study.Psycho-oncology · 2025Article
- Health professionals contacting patients' relatives directly about genetic risk (with patient consent): current clinical practice and perspectives.European journal of human genetics : EJHG · 2025Article
- Investigating genetic counselors' communication with Lynch syndrome patients about cascade testing: Barriers, facilitators, and strategies.Journal of genetic counseling · 2025Article
- Patients' perspectives regarding health professionals contacting their relatives about genetic risk directly (with patient consent).European journal of human genetics : EJHG · 2025Article
- Health System-Led Early Consent and Direct Contact of At-Risk Relatives: Pilot Study Results.Public health genomics · 2025Article
- IMPACT-FH Study for Implementing Innovative Family Communication and Cascade Testing Strategies for Familial Hypercholesterolemia.JACC. Advances · 2024Article
- Innovative Implementation Strategies for Familial Hypercholesterolemia Cascade Testing: The Impact of Genetic Counseling.Journal of personalized medicine · 2024Article
- Exploring family communication preferences in hereditary breast and ovarian cancer and Lynch syndrome: a national Canadian survey.Journal of community genetics · 2024Article
- The experience of receiving a letter from a cancer genetics clinic about risk for hereditary cancer.European journal of human genetics : EJHG · 2024Article
- Direct notification by health professionals of relatives at-risk of genetic conditions (with patient consent): views of the Australian public.European journal of human genetics : EJHG · 2024Article
- "I Didn't Have to Worry about It": Patient and Family Experiences with Health System Involvement in Notifying Relatives of Genetic Test Results.Public health genomics · 2024Article
- Article
- Privacy Implications of Contacting the At-Risk Relatives of Patients with Medically Actionable Genetic Predisposition, with Patient Consent: A Hypothetical Australian Case Study.Biotech (Basel (Switzerland)) · 2023Article
Corrections and comments
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Authors and funding
10 authors.
Funding
Abstract
Health benefits to relatives of people at known genetic risk for hereditary cancer syndromes is key to realizing the promise of precision medicine. We conducted a qualitative study to design a patient- and family-centered program for direct contact of relatives to recommend cascade genetic testing. We conducted two rounds of data collection using focus groups followed by individual interviews with patients with HBOC or Lynch syndrome and a separate sample of people with a family history of hereditary cancers. Results indicate that U.S.-based health system-led direct contact of relatives is acceptable to patients and families, should take a programmatic approach, include consent of relatives before proband testing, complement to existing patient-mediated disclosure, and allow for relative control of information. Our findings suggest a set of requirements for U.S.-based direct contact programs that could ultimately benefit more relatives than current approaches.
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Registered trials
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.