Adverse Events in Cancer Genetic Testing

Brierley, Karina L.; Blouch, Erica; Cogswell, Whitney A.; Homer, Jeanne; Pencarinha, Debbie; Stanislaw, Christine; Matloff, Ellen

doi:10.1097/ppo.0b013e3182609490

Cited by 92 publications

(31 citation statements)

References 33 publications

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“…This could lead to other providers with no specialized training in genetics taking on the responsibility of genetic testing, test interpretation and counseling. Such a situation may not be ideal since there have been several reports of adverse patient outcomes when non-genetics providers incorrectly ordered and interpreted genetic testing results and/or provided inadequate genetic counseling (Bensend et al 2013;Bonadies et al 2014;Brierley et al 2010Brierley et al , 2012. Additionally, although there is no clear evidence that the existing genetic counseling workforce cannot meet the demand for services even with the increased availability of genetic testing, the geographic distribution of genetic counselors is limited, particularly in some rural areas of the country (National Society of Genetic Counselors 2014).…”

Section: Introductionmentioning

confidence: 99%

A Comparison of Telephone Genetic Counseling and In‐Person Genetic Counseling from the Genetic Counselor's Perspective

Burgess

Carmany

Trepanier

2015

Journal of Genetic Counseling

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Growing demand for and limited geographic access to genetic counseling services is increasing the need for alternative service delivery models (SDM) like telephone genetic counseling (TGC). Little research has been done on genetic counselors' perspectives of the practice of TGC. We created an anonymous online survey to assess whether telephone genetic counselors believed the tasks identified in the ABGC (American Board of Genetic Counseling) Practice Analysis were performed similarly or differently in TGC compared to in person genetic counseling (IPGC). If there were differences noted, we sought to determine the nature of the differences and if additional training might be needed to address them. Eighty eight genetic counselors with experience in TGC completed some or all of the survey. Respondents identified differences in 13 (14.8%) of the 88 tasks studied. The tasks identified as most different in TGC were: "establishing rapport through verbal and nonverbal interactions" (60.2%; 50/83 respondents identified the task as different), "recognizing factors affecting the counseling interaction" (47.8%; 32/67), "assessing client/family emotions, support, etc." (40.1%; 27/66) and "educating clients about basic genetic concepts" (35.6%; 26/73). A slight majority (53.8%; 35/65) felt additional training was needed to communicate information without visual aids and more effectively perform psychosocial assessments. In summary, although a majority of genetic counseling tasks are performed similarly between TGC and IPGC, TGC counselors recognize that specific training in the TGC model may be needed to address the key differences.

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Section: Introductionmentioning

confidence: 99%

A Comparison of Telephone Genetic Counseling and In‐Person Genetic Counseling from the Genetic Counselor's Perspective

Burgess

Carmany

Trepanier

2015

Journal of Genetic Counseling

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“…In fact, results suggest general adherence to NCCN surveillance guidelines despite lack proficiency in genetics knowledge (9, 10, 12). In contrast, negative outcomes reported through case reports when genetic testing occurs without adequate GC include misinterpretation of test results and inappropriate cancer screening/prevention recommendations(13). These observations require further systematic study in large unselected samples of BRCA carriers from diverse settings to enhance their generalizability.…”

Section: Discussionmentioning

confidence: 99%

Modes of delivery of genetic testing services and the uptake of cancer risk management strategies in BRCA1 and BRCA2 carriers

et al. 2013

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BRCA testing services are now offered by various healthcare providers, thus it is important to evaluate whether the implementation of cancer risk management (CRM) strategies varies by service provider. Using a registry-based sample of 795 female BRCA mutation carriers, we explored the association between uptake of CRM strategies with duration of genetic counseling (GC) sessions, provider type, and other demographic and clinical variables. All participants completed a baseline questionnaire. Information about uptake of CRM strategies was collected for a subset of 438 participants who completed additional questions. Summary statistics and Pearson Chi square tests were used to examine the associations between demographic and clinical variables with service delivery factors and with the uptake of various CRM strategies. Overall uptake of CRM strategies was high across all provider types. However, GC sessions were longer when provided by a genetics professional than by another provider (p<0.001). Furthermore, higher frequencies of uptake of most CRM strategies were associated with longer GC sessions and when testing was done with involvement of a genetics professional. Identification of factors to optimize delivery of these specialized GC services is important to maximize implementation of CRM strategies in BRCA carriers.

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“…30–32 A recent survey of 10,000 American physicians conducted by the American Medical Association found that only 26% understood how genetics tests could influence treatment decisions, and only 10% felt adequately trained to integrate genetic testing into their practice. 33 The new dimension of genome-informed medical care is likely to further unmask knowledge gaps in this area and increase the frequency of misinterpretations, thereby exposing patients to medical risk.…”

Section: Improving Genomic Literacy Among Care Providersmentioning

confidence: 99%

Ethical, legal, and social implications of incorporating genomic information into electronic health records

Hazin

Malin

Koenig

et al. 2013

Genetics in Medicine

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The inclusion of genomic data in the electronic health record raises important ethical, legal, and social issues. In this article, we highlight these challenges and discuss potential solutions. We provide a brief background on the current state of electronic health records in the context of genomic medicine, discuss the importance of equitable access to genome-enabled electronic health records, and consider the potential use of electronic health records for improving genomic literacy in patients and providers. We highlight the importance of privacy, access, and security, and of determining which genomic information is included in the electronic health record. Finally, we discuss the challenges of reporting incidental findings, storing and reinterpreting genomic data, and nondocumentation and duty to warn family members at potential genetic risk.

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Adverse Events in Cancer Genetic Testing

Cited by 92 publications

References 33 publications

A Comparison of Telephone Genetic Counseling and In‐Person Genetic Counseling from the Genetic Counselor's Perspective

A Comparison of Telephone Genetic Counseling and In‐Person Genetic Counseling from the Genetic Counselor's Perspective

Modes of delivery of genetic testing services and the uptake of cancer risk management strategies in BRCA1 and BRCA2 carriers

Ethical, legal, and social implications of incorporating genomic information into electronic health records

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