All in the family: Evaluation of the process and content of sisters' communication aboutBRCA1 andBRCA2 genetic test results

2002 ◽  
Vol 107 (2) ◽  
pp. 143-150 ◽  
Author(s):  
Chanita Hughes ◽  
Caryn Lerman ◽  
Marc Schwartz ◽  
Beth N. Peshkin ◽  
Lari Wenzel ◽  
...  
Keyword(s):  
Genetic Test ◽  
Test Results ◽  
Genetic Test Results ◽  
The Family ◽  
Family Evaluation

Intention to communicate BRCA1/BRCA2 genetic test results to the family.

2008 ◽  
Vol 22 (2) ◽  
pp. 303-312 ◽  
Author(s):  
Andrea M. Barsevick ◽  
Susan V. Montgomery ◽  
Karen Ruth ◽  
Eric A. Ross ◽  
Brian L. Egleston ◽  
...  
Keyword(s):  
Genetic Test ◽  
Test Results ◽  
Genetic Test Results ◽  
The Family ◽  
Brca1 Brca2

Communicating Genetic Test Results to the Family

2001 ◽  
Vol 24 (3) ◽  
pp. 13-26 ◽  
Author(s):  
Mary B. Daly ◽  
Andrea Barsevick ◽  
Suzanne M. Miller ◽  
Robert Buckman ◽  
Josephine Costalas ◽  
...  
Keyword(s):  
Genetic Test ◽  
Test Results ◽  
Genetic Test Results ◽  
The Family

Disclosure to the family of breast/ovarian cancer genetic test results: Patient's willingness and associated factors

2000 ◽  
Vol 94 (1) ◽  
pp. 13-18 ◽  
Author(s):  
Claire Julian-Reynier ◽  
Fran�ois Eisinger ◽  
Fran�oise Chabal ◽  
Christine Lasset ◽  
Catherine Nogu�s ◽  
...  
Keyword(s):  
Ovarian Cancer ◽  
Associated Factors ◽  
Genetic Test ◽  
Test Results ◽  
Cancer Genetic ◽  
Genetic Test Results ◽  
The Family

scholarly journals Development of a Web-based Family Intervention for BRCA Carriers and Their Biological Relatives: Acceptability, Feasibility, and Usability Study (Preprint)

2017 ◽  
Author(s):  
Maria C Katapodi ◽  
Miyeon Jung ◽  
Ann M Schafenacker ◽  
Kara J Milliron ◽  
Kari E Mendelsohn-Victor ◽  
...  
Keyword(s):  
Pilot Study ◽  
Family Communication ◽  
Genetic Test ◽  
Test Results ◽  
Brca Mutations ◽  
Web Based ◽  
Genetic Test Results ◽  
The Family ◽  
Family Gene ◽  
Brca Carriers

BACKGROUND Carriers of breast cancer gene (BRCA) mutations are asked to communicate genetic test results to their biological relatives to increase awareness of cancer risk and promote use of genetic services. This process is highly variable from family to family. Interventions that support communication of genetic test results, coping, and offer decision support in families harboring a pathogenic variant may contribute to effective management of hereditary cancer. OBJECTIVE The aim of this paper was to describe the development of the Family Gene Toolkit, a Web-based intervention targeting BRCA carriers and untested blood relatives, designed to enhance coping, family communication, and decision making. METHODS We present findings from focus groups regarding intervention acceptability and participant satisfaction and from a pre-post pilot study with random allocation to a wait-listed control group regarding intervention feasibility and usability. RESULTS The Family Gene Toolkit was developed by a multidisciplinary team as a psycho-educational and skills-building intervention. It includes two live webinar sessions and a follow-up phone call guided by a certified genetic counselor and a master’s prepared oncology nurse. Each live webinar includes two modules (total four modules) presenting information about BRCA mutations, a decision aid for genetic testing, and two skill-building modules for effective coping and family communication. Participants in focus groups (n=11) were highly satisfied with the intervention, reporting it to be useful and describing clearly the important issues. From the 12 dyads recruited in the pre-post pilot study (response rate 12/52, 23%), completion rate was 71% (10/14) for intervention and 40% (4/10) for wait-listed control groups. CONCLUSIONS Acceptability and satisfaction with the Family Gene Toolkit is high. On the basis of the findings from usability and feasibility testing, modifications on timing, delivery mode, and recruitment methods have been implemented. CLINICALTRIAL ClinicalTrials.gov NCT02154633; https://clinicaltrials.gov/ct2/show/NCT02154633 (Archived by WebCite at http://www.webcitation.org/6yYNvLPjv)

Communicating BRCA1/2 genetic test results within the family: A qualitative analysis

2011 ◽  
Vol 26 (8) ◽  
pp. 1018-1035 ◽  
Author(s):  
Caroline Dancyger ◽  
Mel Wiseman ◽  
Chris Jacobs ◽  
Jonathan A. Smith ◽  
Melissa Wallace ◽  
...  
Keyword(s):  
Qualitative Analysis ◽  
Genetic Test ◽  
Test Results ◽  
Genetic Test Results ◽  
The Family

Abstract B5: Personal and social predictors of sharing genetic test results within the family

2010 ◽  
Author(s):  
Mary B. Daly ◽  
Susan Montgomery ◽  
Andrea Barsevick ◽  
Brian Egleston ◽  
Ruth Bingler ◽  
...  
Keyword(s):  
Genetic Test ◽  
Test Results ◽  
Social Predictors ◽  
Genetic Test Results ◽  
The Family

Parents' long-term adjustment to the genetic test results of minors at risk for Long QT Syndrome

2004 ◽  
Author(s):  
K. S. W. H. Hendriks ◽  
F. J. M. Grosfeld ◽  
A. A. M. Wilde ◽  
J. van den Bout ◽  
I. M. van Langen ◽  
...  
Keyword(s):  
At Risk ◽  
Long Qt Syndrome ◽  
Genetic Test ◽  
Test Results ◽  
Long Qt ◽  
Genetic Test Results ◽  
Qt Syndrome

Metagnosis

2020 ◽  
Author(s):  
Danielle Spencer
Keyword(s):  
Real World ◽  
Genetic Test ◽  
Narrative Medicine ◽  
Test Results ◽  
Diagnostic Categories ◽  
Genomic Knowledge ◽  
Blade Runner ◽  
Genetic Test Results ◽  
Scant Attention ◽  
Productive Model

This book identifies and names the phenomenon of metagnosis: the experience of newly learning in adulthood of a long-standing condition. It can occur when the condition has remained undetected (e.g., colorblindness) and/or when the diagnostic categories themselves have shifted (e.g., ADHD). More broadly, it can occur with unexpected revelations bearing upon selfhood, such as surprising genetic test results. This phenomenon has received relatively scant attention, yet learning of an unknown condition is frequently a significant and bewildering revelation, subverting narrative expectations and customary categories. In addressing the topic this book deploys an evolution of narrative medicine as a robust research methodology comprising interdisciplinarity, narrative attentiveness, and creating a writerly text. Beginning with the author’s own experience of metagnosis, it explores the issues it raises—from communicability to narrative intelligibility to different ways of seeing. Next, it traces the distinctive metagnostic narrative arc through the stages of recognition, subversion, and renegotiation, discussing this trajectory in light of a range of metagnostic experiences, from Blade Runner to real-world midlife diagnoses. Finally, it situates metagnosis in relation to genetic revelations and the broader discourses concerning identity. Proposing that the figure of blindsight—drawn from the author’s metagnostic experience—offers a productive model for negotiating such revelations, the book suggests that better understanding metagnosis will not simply aid those directly affected but will also serve as a bellwether for how we will all navigate advancing biomedical and genomic knowledge, and how we may fruitfully interrogate the very notion of identity.

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