Parent perceptions of offspring responses to parental communication of BRCA1/2 test results

2009 ◽  
Vol 27 (15_suppl) ◽  
pp. 1511-1511 ◽  
Author(s):  
A. R. Bradbury ◽  
L. Patrick-Miller ◽  
B. Egleston ◽  
C. Sands ◽  
M. Feigon ◽  
...  
Keyword(s):  
Genetic Test ◽  
Positive Impact ◽  
Childhood And Adolescence ◽  
Test Results ◽  
Variant Of Uncertain Significance ◽  
Mutation Carriers ◽  
Genetic Test Results ◽  
Self Reports ◽  
Uncertain Significance ◽  
The Impact

1511 Background: Many BRCA1/2 mutation carriers report sharing their genetic test results with their minor children. The impact of this communication on offspring remains unknown. Methods: 163 parents who had BRCA1/2 testing completed qualitative interviews regarding their experiences with communication of their genetic test results to offspring. Descriptive responses were coded and response proportions utilized to summarize results. We used multiple regressions fit by GEE to test associations with disclosure. We controlled for parent mutation status in each regression. Results: 163 parents (52 BRCA1/2 mutation carriers) reported on 323 offspring 5 to 25 years old at the time of parent genetic testing. 107 (66%) parents reported disclosing to at least one offspring. Child age (p < 0.001) and parent cancer history (p = 0.004) were positively associated with disclosure. Parents without a BRCA1/2 mutation were more likely to communicate test results than parents with a mutation (p = 0.007). Among parents who disclosed, few (14%) reported they perceived their offspring to have had an initial negative affective or behavioral response. Others (13%) reported offspring concern for self and family. Reports of initial negative responses and concern were more frequent among parents with a mutation or a variant of uncertain significance. Many parents reported that the communication had no significant impact (39%) or a positive impact (36%) on their offspring. Conclusions: Many parents report sharing BRCA1/2 test results with their offspring. Parent self-reports suggest that they do not perceive most offspring to experience adverse reactions to this communication. Self-reports suggest that offspring learning of a BRCA1/2 mutation or a variant of uncertain significance may be more susceptible to initial negative reactions. Further research is necessary to explore psychosocial and behavioral responses to learning of hereditary risk during childhood and adolescence, and to inform the development of interventions to optimize adaptive response. No significant financial relationships to disclose.

The positive impact of implementing an onsite guideline-based genetic testing procedure for prostate cancer in a multidisciplinary uro-oncology clinic.

2021 ◽  
Vol 39 (6_suppl) ◽  
pp. 234-234
Author(s):  
Siddharth Ramanathan ◽  
Sadhna Ramanathan ◽  
Andrew Korman ◽  
Samer Ballouz ◽  
Michael Ghilezan ◽  
...  
Keyword(s):  
Prostate Cancer ◽  
Genetic Testing ◽  
Cancer Patients ◽  
Genetic Test ◽  
Positive Impact ◽  
Consensus Conference ◽  
Successful Implementation ◽  
Test Results ◽  
Genetic Test Results ◽  
To Receive

234 Background: Prior to the guidelines set forth by the 2017 Philadelphia consensus conference, genetic testing for prostate cancer was conducted based on personal and family history of malignancies pursuant to NCCN recommendations. The 2017 guidelines expanded testing criteria to included age at diagnosis, metastatic disease, and tumor sequencing. In spite of these advancements, limited literature is available regarding successful implementation of a streamlined system for genetic testing in prostate cancer. This paper explores the benefits of implementing an on-site guideline-based genetic testing process for prostate cancer patients treated at a multi-disciplinary uro-oncology practice. Methods: Data was retrospectively reviewed for 561 prostate cancer patients seen in a multi-disciplinary uro-oncology clinic since January 2017. Prior to January, 1, 2019 genetic testing was recommended to patients based on NCCN guidelines, and swabs for testing were procured off-site less than 1 mile from the clinic (n=107). After January, 1, 2019 genetic testing was recommended based on the guidelines set forth by the Philadelphia consensus conference, and swabs for testing were procured at the clinic itself (n=454). Results: A statistically significant increase in compliance with genetic testing was observed after the implementation of an on-site, guideline-based testing process. Patient compliance with genetic testing increased from 33.6% to 96.5%. The time to receive the genetic test results (calculated as the time between referral for genetic testing and obtaining the test results) was also significantly improved from 38 days to 21 days. Conclusions: The implementation of an on-site, guideline-based genetic testing model for prostate cancer patients significantly improved compliance with genetic testing to 96.5% and decreased the time to receive genetic test results by 17 days. Overall, adopting a guide-line based model with on-site genetic testing has the potential to significantly improve the detection rate for pathogenic and actionable mutations, increase the utilization of targeted therapies, and increase cascade testing to include at-risk family members.

How Often Do BRCA Mutation Carriers Tell Their Young Children of the Family's Risk for Cancer? A Study of Parental Disclosure of BRCA Mutations to Minors and Young Adults

2007 ◽  
Vol 25 (24) ◽  
pp. 3705-3711 ◽  
Author(s):  
Angela R. Bradbury ◽  
James J. Dignam ◽  
Comfort N. Ibe ◽  
Sogyong L. Auh ◽  
Fay J. Hlubocky ◽  
...  
Keyword(s):  
Genetic Test ◽  
Brca Mutation ◽  
Genetic Counselor ◽  
Parent Report ◽  
Test Results ◽  
Hereditary Risk ◽  
Mutation Carriers ◽  
Genetic Test Results ◽  
Brca Mutation Carriers ◽  
Risk Of Cancer

Purpose Predictive genetic testing for adult-onset diseases is generally discouraged until the age at which interventions are believed to be helpful. Yet, many BRCA mutation carriers discuss their results with their children. This study describes the prevalence and experiences of parental communication of BRCA results to children under the age of 25 years old. Patients and Methods Forty-two BRCA mutation carriers completed semistructured telephone interviews assessing self-reported disclosure to offspring and parent experiences with disclosure. Qualitative responses were coded for themes. χ2 tests and logistic regression analyses with robust variance estimates were used to evaluate parent and child characteristics associated with disclosure. Results Fifty-five percent of parents reported discussing hereditary risk of cancer with at least one child. By parent report, 49% of the 86 offspring learned of their parents genetic test results or the hereditary cancer risk. Offspring age was strongly associated with disclosure (P = .001), and the majority of adolescent and adult children learned of the familial mutation or the hereditary risk of cancer. Parents reported that some offspring did not appear to understand the significance of the information shared, and that some offspring had initial negative reactions to disclosure. Physician (14%) and genetic counselor (21%) involvement in parent decisions to disclose were low. Conclusion Children of BRCA mutation carriers learn of their parents genetic test results many years before preventive interventions are indicated. Further research is needed to examine how young individuals understand this information and its psychosocial impact and influence on subsequent lifestyle and health behaviors.

scholarly journals How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study

2015 ◽  
Vol 18 (4) ◽  
pp. 216-224 ◽  
Author(s):  
Jenny E. Ostergren ◽  
Michele C. Gornick ◽  
Deanna Alexis Carere ◽  
Sarah S. Kalia ◽  
Wendy R. Uhlmann ◽  
...  
Keyword(s):  
Genetic Test ◽  
Genomic Testing ◽  
Test Results ◽  
Personal Genomics ◽  
Personal Genomic ◽  
Personal Genomic Testing ◽  
Direct To Consumer ◽  
Genetic Test Results ◽  
The Impact

BRCA testing concordance with national guidelines for patients with breast cancer in community cancer programs.

2020 ◽  
Vol 38 (15_suppl) ◽  
pp. 1526-1526
Author(s):  
Leigh Boehmer ◽  
Latha Shivakumar ◽  
Christine B. Weldon ◽  
Julia Rachel Trosman ◽  
Stephanie A. Cohen ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Family History ◽  
High Risk ◽  
Genetic Test ◽  
Breast Conserving Surgery ◽  
Test Results ◽  
Cancer Genes ◽  
National Guidelines ◽  
Genetic Test Results ◽  
The Impact

1526 Background: Current National Comprehensive Cancer Network guidelines for genetic/familial high-risk assessment state that testing for highly penetrant breast/ovarian cancer genes is clinically indicated for women with early onset (≤ 45 years) or metastatic HER-2 negative breast cancer. A recent Association of Community Cancer Centers (ACCC) survey (N = 95) showed that > 80% of respondents reported ≤ 50% testing rate of patients with breast cancer who met guidelines. Given this disconnect, ACCC partnered with 15 community cancer programs to assess practice gaps and support interventions to improve access to genetic counseling (GC)/testing. Methods: Pre-intervention data from 9/15 partner programs for women diagnosed with stages 0-III breast cancer between 01/01/2017 and 06/30/2019 was collected. De-identified variables included: family history documentation, GC appointment/test results, and timing of results relative to treatment decisions. Results: There were 2691 women with stages 0-III breast cancer. Forty-eight percent (1284/2691) had a documented high-risk family history, 57% (729/1284) of whom had a GC appointment. This was a significantly higher rate of GC compared to the 23% (181/778) of women with no family history and 6% (35/629) of women with no documentation of family history (p < 0.0001). Patients ≤ 45 years old attended a GC appointment 72% (199/278) of the time and 49% (135/278) had genetic test results, with 84% (113/135) receiving results before surgery. For women with test results available before surgery, 37% (119/322) had breast conserving surgery, compared to 60% (144/240) with test results disclosed post-operatively (p < 0.0001). Conclusions: Genetic testing is underutilized in a community cohort of women with breast cancer. Further analysis is needed to understand the impact genetic test results have on surgical decisions. Opportunities exist to improve current rates of appropriate GC/testing. ACCC will share results of quality improvement projects to illuminate which strategies hold promise in reducing the hereditary breast cancer GC/testing practice gap.

scholarly journals Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Jane Tiller ◽  
Aideen McInerney-Leo ◽  
Andrea Belcher ◽  
Tiffany Boughtwood ◽  
Penny Gleeson ◽  
...  
Keyword(s):  
Life Insurance ◽  
Financial Services ◽  
Genetic Test ◽  
Insurance Industry ◽  
Genetic Research ◽  
Evaluation Framework ◽  
Test Results ◽  
Financial Industry ◽  
Genetic Test Results ◽  
The Impact

Abstract Background The use of genetic test results in risk-rated insurance is a significant concern internationally, with many countries banning or restricting the use of genetic test results in underwriting. In Australia, life insurers’ use of genetic test results is legal and self-regulated by the insurance industry (Financial Services Council (FSC)). In 2018, an Australian Parliamentary Inquiry recommended that insurers’ use of genetic test results in underwriting should be prohibited. In 2019, the FSC introduced an industry self-regulated moratorium on the use of genetic test results. In the absence of government oversight, it is critical that the impact, effectiveness and appropriateness of the moratorium is monitored. Here we describe the protocol of our government-funded research project, which will serve that critical function between 2020 and 2023. Methods A realist evaluation framework was developed for the project, using a context-mechanism-outcome (CMO) approach, to systematically assess the impact of the moratorium for a range of stakeholders. Outcomes which need to be achieved for the moratorium to accomplish its intended aims were identified, and specific data collection measures methods were developed to gather the evidence from relevant stakeholder groups (consumers, health professionals, financial industry and genetic research community) to determine if aims are achieved. Results from each arm of the study will be analysed and published in peer-reviewed journals as they become available. Discussion The A-GLIMMER project will provide essential monitoring of the impact and effectiveness of the self-regulated insurance moratorium. On completion of the study (3 years) a Stakeholder Report will be compiled. The Stakeholder Report will synthesise the evidence gathered in each arm of the study and use the CMO framework to evaluate the extent to which each of the outcomes have been achieved, and make evidence-based recommendations to the Australian federal government, life insurance industry and other stakeholders.

scholarly journals The impact of receiving genetic test results on general and cancer-specific psychologic distress among members of an African-American kindred with aBRCA1 mutation

Cancer ◽  
2005 ◽  
Vol 104 (11) ◽  
pp. 2508-2516 ◽  
Author(s):  
Anita Yeomans Kinney ◽  
Lindsey E. Bloor ◽  
Diptasri Mandal ◽  
Sara Ellis Simonsen ◽  
Bonnie Jeanne Baty ◽  
...  
Keyword(s):  
African American ◽  
Genetic Test ◽  
Test Results ◽  
Genetic Test Results ◽  
Psychologic Distress ◽  
The Impact

Disclosure patterns and decision making preferences in BRCA 1/2 mutation carriers with young adult and minor children

2006 ◽  
Vol 24 (18_suppl) ◽  
pp. 1015-1015
Author(s):  
A. R. Bradbury ◽  
C. K. Daugherty ◽  
J. Dignam ◽  
C. Ibe ◽  
S. Auh ◽  
...  
Keyword(s):  
Decision Making ◽  
Genetic Test ◽  
Prophylactic Surgery ◽  
Test Results ◽  
Mutation Carriers ◽  
Genetic Test Results ◽  
History Of ◽  
Minor Children ◽  
Risk Of Cancer ◽  
Disclosure Patterns

1015 Background: Genetic testing of minors for adult-onset diseases has generally been discouraged. Yet, limited data suggests that many BRCA mutation carriers discuss their test results with their minor children. How parents make the decision to share this information and the effects on their health, their child and the family remains unknown. Methods: We sought to evaluate disclosure patterns and decision making practices among BRCA1/2 mutation carriers with children under the age of 25. 42 parents (with 86 children) completed a semi-structured telephone interview regarding communication of their genetic test results to their children. Chi-squared tests to assess associations between parent/child characteristics and disclosure were computed using robust variance estimates to account for clustering by family unit. Results: 55% of parents discussed hereditary risk of cancer and/or their genetic test results with at least one child. Factors associated with disclosure included older child age (p<0.001), female parent gender (p=0.049), parent history of prophylactic surgery (mastectomy: p = 0.021, oophorectomy: p<0.001) and education limited to high school (p=0.085). Child gender and parent’s history of cancer were not significantly associated with disclosure. Most participants reported themselves (45%) or their spouse (40%) as the most important person in the decision to disclose. Reports of physician (14%) and genetic counselor (21%) involvement were low. Conclusions: Parental decisions to disclose BRCA test results to children are complex and may reflect differences in perceptions of genetic disease. Further research is needed to understand parental motivations for disclosure and to define a role for health care professionals to improve counseling and recommendations regarding the risks and benefits of early communication of genetic risk to children. No significant financial relationships to disclose.

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
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