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Patients’ perceptions and practices of informing relatives: a qualitative study within a randomised trial on healthcare-assisted risk disclosure
In a multicentre randomised controlled trial (DIRECT), we evaluate whether an intervention of providing direct letters from healthcare professionals...
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Interest in genetic susceptibility testing and disclosure of AD dementia risk in cognitively normal adults: a survey study
BackgroundApolipoprotein-E (APOE) genetic testing for Alzheimer’s disease is becoming more important as clinical trials are increasingly targeting...
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Clinician perspectives on policy approaches to genetic risk disclosure in families
Genomic sequencing has emerged as a powerful tool with significant implications for patients and their relatives, however, empirical evidence...
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Disclosure of genetic risk to dating partners among young adults with von Hippel-Lindau disease
Individuals with genetic disease face unique challenges related to navigating dating relationships. While previous studies have explored the impact...
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Challenges of secondary finding disclosure in genomic medicine in rare diseases: A nation-wide survey of Japanese facilities outsourcing comprehensive genetic testing
Comprehensive genome analysis may reveal secondary findings (SFs) including pathogenic variants of genes other than those originally targeted....
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Proband-mediated interventions to increase disclosure of genetic risk in families with a BRCA or Lynch syndrome condition: a systematic review
Interventions to assist family communication about inherited cancer risk have the potential to improve family cancer outcomes. This review aimed to...
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Men with metastatic prostate cancer carrying a pathogenic germline variant in breast cancer genes: disclosure of genetic test results to relatives
Some patients with metastatic prostate cancer carry a pathogenic germline variant (PV) in a gene, that is mainly associated with an increased risk of...
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Price transparency of prostate cancer care in the United States: An analysis of pricing and disclosure following the centers for medicare and medicaid mandate
BackgroundStarting January 1, 2021, Centers for Medicare and Medicaid Services required United States hospitals to publicly disclose prices of their...
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Disclosure of genetic information to family members: a systematic review of normative documents
PurposeFindings from genomic sequencing can have important implications for patients and family members. Yet, when a patient does not consent to the...
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A systematic literature review of disclosure practices and reported outcomes for medically actionable genomic secondary findings
PurposeSecondary findings (SFs) are present in 1–4% of individuals undergoing genome/exome sequencing. A review of how SFs are disclosed and what...
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Physicians’ perceptions of the factors influencing disclosure of secondary findings in tumour genomic profiling in Japan: a qualitative study
Tumour genomic profiling (TGP), conducted in search of therapeutics, sometimes reveals potentially pathogenic germline variants as secondary findings...
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Consensus Head Acceleration Measurement Practices (CHAMP): Origins, Methods, Transparency and Disclosure
The use of head kinematic measurement devices has recently proliferated owing to technology advances that make such measurement more feasible. In...
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GUÍA: a digital platform to facilitate result disclosure in genetic counseling
PurposeUse of genomic sequencing is increasing at a pace that requires technological solutions to effectively meet the needs of a growing patient...
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Whether, when, how, and how much? General public’s and cancer patients’ views about the disclosure of genomic secondary findings
BackgroundData on the modalities of disclosing genomic secondary findings (SFs) remain scarce. We explore cancer patients’ and the general public’s...
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Remote vs in-person BRCA1/2 non-carriers test disclosure: patients’ choice during Covid-19 pandemic restriction
During Covid-19 pandemic most hospitals have restricted in-person delivery of non-essential healthcare services, including genetic testing delivery,...
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Disclosure of clinically actionable genetic variants to thoracic aortic dissection biobank participants
BackgroundDisclosure of pathogenic variants to thoracic aortic dissection biobank participants was implemented. The impact and costs, including...
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Sickle cell trait newborn screen results: disclosure and management
This study aims to evaluate the notification process of sickle cell trait (SCT) identified by newborn screening in Alberta. On April 1, 2019, Alberta...
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Perspectives regarding family disclosure of genetic research results in three racial and ethnic minority populations
The lack of data on perspectives of racial and ethnic minority populations regarding family disclosure of individual research results (IRR) hinders...