Maternal perceptions of <i>BRCA</i> genetic counseling communication processes about disclosing cancer risk information to children and adult relatives

Hamilton, Jada G.; Peshkin, Beth N.; Mays, Darren; DeMarco, Tiffani A.; Patenaude, Andrea Farkas; Tercyak, Kenneth P.

doi:10.1002/pon.4733

Cited by 6 publications

(5 citation statements)

References 33 publications

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“…Once an individual is identified to have a mutation in a high‐penetrance inherited cancer predisposition gene, it becomes very important that this information be shared with at‐risk relatives so that they too can be proactive with cancer risk management (especially if they are confirmed to have the identified familial mutation) 14 . Most HBC syndromes are inherited in an autosomal dominant pattern, meaning that first‐ and second‐degree relatives of a known mutation carrier have a 50% and 25% chance, respectively, to also carry the mutation 46,47 . The first individual within a family found to harbor a mutation is generally responsible for sharing their positive result with relatives.…”

Section: Improving Identification Of Hereditary Cancer Predispositionmentioning

confidence: 99%

Update on multi‐gene panel testing and communication of genetic test results

Reid

Pal

2020

Breast J

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With technological advances, multi‐gene panel testing has become increasingly used to identify patients at risk for hereditary breast cancer (HBC). There are currently evidence‐based interventions and breast cancer screening strategies that exist for cancer prevention and early detection among patients with HBC. Moreover, in addition to the personal impact of identifying HBC, this information may be shared with at‐risk family members to amplify the benefits of testing and subsequent care among those at high risk. Opportunities and challenges with the utilization of updated multi‐gene panel testing for HBC, including: (a) tumor sequencing with germline consequences; (b) genetic counseling implications; and (c) strategies to improve the communication of genetic test results to family members will be reviewed. With the advances and expansion of genetic testing, all health care providers need to be updated on both the importance and complexities of HBC counseling and testing, in order to optimize patient care.

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Section: Improving Identification Of Hereditary Cancer Predispositionmentioning

confidence: 99%

Update on multi‐gene panel testing and communication of genetic test results

Reid

Pal

2020

Breast J

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“…Participants' knowledge of key genetic health concepts was assessed using a measure containing 14 true/false items. The measure was taken from a 16‐item true/false scale utilized in a previous study on parental genetic testing for cancer risk (Hamilton et al, 2018). In the present sample, internal consistency of the measure was excellent (KR‐20 = 0.90) and 53% of parents scored at or above 80% correct.…”

Section: Methodsmentioning

confidence: 99%

Measuring high‐risk parents' opinions about direct‐to‐consumer genetic testing for adult‐onset inherited cancer syndromes in their adolescent and young adult children

Hasser

Peshkin

Hamilton

et al. 2023

Journal of Genetic Counseling

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Neither direct‐to‐consumer (DTC) genetic testing nor predictive genetic testing for adult‐onset conditions is recommended for minor children due to ethical concerns and low clinical utility. However, parents with pathogenic variants (PVs) in disease‐causing genes may be interested in pursuing genetic testing that includes the familial PV for their children. The Pediatric Testing Attitudes Scale (P‐TAS) was previously developed to examine high‐risk parents' opinions about pediatric BRCA genetic testing for adult‐onset breast/ovarian cancer. Here, the psychometric properties of the P‐TAS were examined in a new sample of N = 126 parents (M age = 47.2 years) with PVs in a more complete set of cancer risk genes represented on DTC panel tests. The mean score on the P‐TAS was 44 out of a maximum score of 60, indicating that a majority of parents generally held favorable opinions about testing their children for adult‐onset inherited cancer syndromes. The internal consistency of the full scale was high (α = 0.91). A factor analysis identified two‐component scales, labeled Attitudes and Beliefs (α = 0.93) and Decision Making and Communication (α = 0.83). In a multivariable regression model, P‐TAS co‐factors accounted for 34% of variance in parental opinions, including the frequency of prior family communication about cancer and the likelihood of utilizing DTC genetic testing with children (R2 = 0.34, p < 0.001). Results suggest that the P‐TAS remains a reliable measure to assess high‐risk parents' opinions about pediatric DTC genetic testing for adult‐onset conditions, with promising validity. Applications of the P‐TAS include informing genetic counseling practice, pediatric medical care, and policy guidelines surrounding DTC genetic testing.

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“…The 92 participants had 417 living FDRs. Mean family size was 4.5 ± 2.06 (range, [1][2][3][4][5][6][7][8][9][10][11]. The correlation between family size and the proportion of relatives who were told about their risk was not statistically significant (r = −0.096, P = .362).…”

Section: Relationship Characteristics Of Probands With Their Fdrsmentioning

confidence: 99%

“…The genetic risk communication from proband to relatives varies from family to family, and patients and their families often need support with the communication of genetic test results, coping, and making decisions to manage hereditary cancer risks effectively 9 . For probands, the genetic counseling process should focus on understanding genetic risks of family members and the importance of communicating the risk so that family members may benefit from testing and subsequent risk reduction strategies 10–13 . Despite the critical need to support family communication of genetic risks, Hamilton et al 11 reported that family communication is not consistently included as part of a genetic counseling session.…”

mentioning

confidence: 99%

“…For probands, the genetic counseling process should focus on understanding genetic risks of family members and the importance of communicating the risk so that family members may benefit from testing and subsequent risk reduction strategies 10–13 . Despite the critical need to support family communication of genetic risks, Hamilton et al 11 reported that family communication is not consistently included as part of a genetic counseling session. The proband needs help to understand the full implications of having a positive test result for herself and for her family members 14 .…”

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From Probands to Relatives

et al. 2020

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Background The genetic risk communication from proband to relatives varies from family to family, and patients often need support with the communication of genetic test results and making decisions to manage hereditary cancer risks. Objective The aim of this study was to characterize the communication of BRCA1 or BRCA2 (BRCA1/2) genetic risk from proband to first-degree relatives (FDRs) using a social network framework. Methods We characterized network and nonnetwork factors to explore their association with which FDRs were told about the genetic risk and whether or not relatives underwent genetic testing. Ninety-two female probands with hereditary breast and ovarian cancer who have confirmed BRCA1/2 mutations participated in the study. Communication of hereditary breast and ovarian cancer risk was assessed between 92 probands and their 417 FDRs. Results Of 92 probands, 94.5% (n = 87) communicated their genetic test result to at least one of their FDRs. Of FDRs older than 18 years, 19.9% (n = 72) have genetic testing. Emotional closeness, educational level of the proband, and relative's age were significantly associated with communicating test results with FDRs. Conclusion Communication of genetic risk with the FDRs after having a BRCA1/2 gene-mutation–positive test result was high in this group of cancer patients. However, the rate of genetic testing among FDRs was low. Implications for Practice Probands' educational level and age of relatives for cascade genetic screening should be considered during counseling. Interventions to support women with BRCA1/2 mutations during the communication process and their family members' engagement in testing and risk-reducing strategies are needed.

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Maternal perceptions of BRCA genetic counseling communication processes about disclosing cancer risk information to children and adult relatives

Cited by 6 publications

References 33 publications

Update on multi‐gene panel testing and communication of genetic test results

Update on multi‐gene panel testing and communication of genetic test results

Measuring high‐risk parents' opinions about direct‐to‐consumer genetic testing for adult‐onset inherited cancer syndromes in their adolescent and young adult children

From Probands to Relatives

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