Legislation in the genomic era: the Affordable Care Act and genetic testing for cancer risk assessment

Walcott, Farzana L.; Dunn, Barbara K.

doi:10.1038/gim.2015.18

Cited by 9 publications

(5 citation statements)

References 4 publications

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“…Nonetheless, the screening interventions that may be required for patients with positive genetic test results can be cost-prohibitive; insurance coverage of preventive measures for carriers of deleterious germline pathogenic variants is not mandated by the Affordable Care Act, and these costs can disproportionately affect low-income minority populations. 24 Furthermore, many patients with breast cancer undergo genetic testing without ever seeing a genetic counselor, and the growing use of multigene panels adds more challenges and complexity for both medical providers and patients. 25 Knowledge of other inherited breast cancer related risks, such as pathogenic variants in PALB2 , ATM , and CHEK2 , could warrant rereferral for genetic counseling and potential expanded multigene panel testing among patients with TNBC who had previously tested negative for a BRCA pathogenic variant.…”

Section: Discussionmentioning

confidence: 99%

Genetic Counseling Referral Rates in Long-Term Survivors of Triple-Negative Breast Cancer

Barcenas

Shafaee

Sinha

et al. 2018

J Natl Compr Canc Netw

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Inherited gene mutations (pathogenic variants) cause 10% of breast cancers. pathogenic variants predispose carriers to triple-negative breast cancer (TNBC); around 30% of patients with TNBC carry pathogenic variants. The 2018 NCCN Guidelines for Genetic/Familial High-Risk Assessment: Breast and Ovarian recommend genetic counseling referrals for patients with TNBC diagnosed at age ≤60 years. This study sought to describe genetic counseling referral patterns among long-term TNBC survivors at The University of Texas MD Anderson Cancer Center. This single-institution retrospective analysis of female long-term (disease-free for ≥5 years) TNBC survivors sought to determine the rate of genetic counseling referral among patients diagnosed at age ≤60 years between 1992 and 2008. Patients who underwent treatment and surveillance visits at our institution and were followed until 2017 were included. We collected pathogenic variant status among tested patients. Descriptive statistical methods and a univariate analysis were used to identify patient characteristics associated with genetic counseling referral. We identified 646 female long-term TNBC survivors with a median age at diagnosis of 47 years. Of these, 245 (38%) received a recommendation for a genetic counseling referral. Among those referred, 156 (64%) underwent genetic testing, and 35% of those tested had pathogenic variants. Interestingly, among those referred, 20% declined genetic testing. The rate of genetic referrals improved over time, from 25% among TNBC survivors whose last surveillance visit was between 2011 and 2013 to 100% among those whose last surveillance visit was between 2014 or later. Younger age and premenopausal status at diagnosis and a family history of breast or ovarian cancer were associated with an increased rate of referral for genetic counseling. Among long-term TNBC survivors, the rate of referral to genetic counseling increased over time, and among those tested, 35% carried a pathogenic variant. Survivorship care provides an excellent opportunity to refer eligible patients for genetic counseling.

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Section: Discussionmentioning

confidence: 99%

Genetic Counseling Referral Rates in Long-Term Survivors of Triple-Negative Breast Cancer

Barcenas

Shafaee

Sinha

et al. 2018

J Natl Compr Canc Netw

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“…As a result, the rate of RRSO implementation in South Korea had recently increased to 52.4% [ 16 ]. In the United States, the Patient Protection and Affordable Care Act (ACA) of 2014 requires that women with a family history of HBOC or suspected cancer be offered genetic counseling and testing for BRCA free of cost, as long as they are not currently being treated for cancer [ 17 ]. BRCA genetic testing for men and women currently being treated for cancer is not covered under the ACA, but most private health insurance companies provide coverage to patients with suspected HBOC [ 18 ].…”

Section: Discussionmentioning

confidence: 99%

Current status of hereditary breast and ovarian cancer practice among gynecologic oncologists in Japan: a nationwide survey by the Japan Society of Gynecologic Oncology (JSGO)

et al. 2022

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Objective The practices pertaining to hereditary breast and ovarian cancer (HBOC) in Japan have been rapidly changing owing to the clinical development of poly(ADP-ribose) polymerase inhibitors, the increasing availability of companion diagnostics, and the broadened insurance coverage of HBOC management from April 2020. A questionnaire of gynecologic oncologists was conducted to understand the current status and to promote the widespread standardization of future HBOC management. Methods A Google Form questionnaire was administered to the members of the Japan Society of Gynecologic Oncology. The survey consisted of 25 questions in 4 categories: respondent demographics, HBOC management experience, insurance coverage of HBOC management, and educational opportunities related to HBOC. Results A total of 666 valid responses were received. Regarding the prevalence of HBOC practice, the majority of physicians responded in the negative and required human resources, information sharing and educational opportunities, and expanded insurance coverage to adopt and improve HBOC practice. Most physicians were not satisfied with the educational opportunities provided so far, and further expansion was desired. They remarked on the psychological burdens of many HBOC managements. Physicians reported these burdens could be alleviated by securing sufficient time to engage in HBOC management, creating easy-to-understand explanatory material for patients, collaboration with specialists in genetic medicine, and educational opportunities. Conclusion Gynecologic oncologists in Japan are struggling to deal with psychological burdens in HBOC practice. To promote the clinical practice of HBOC management, there is an urgent need to strengthen human resources and improve educational opportunities, and expand insurance coverage for HBOC management.

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“…Both the US Health Information Technology and Clinical Health Act (HITECH) and the EU Directive 2016/680 Regulation 2016/679 provide safeguarding of individuals health data and how it is handled and transmitted. As part of the 2010 US Patient Protection and Affordable Care Act (ACA) cancer risk assessment, via genetic testing, was promoted as a preventive measure under the assurance that no person would be negatively impacted by changes in cost or provision in their insurance cover [239]. While the legislation was not fully comprehensive of all conditions, the ‘good-will’ of preventive medicine, based on personalized risk, was present.…”

Section: Ethical Issues Surrounding Genetic Datamentioning

confidence: 99%

Review of applications of high-throughput sequencing in personalized medicine: barriers and facilitators of future progress in research and clinical application

Lightbody

Haberland

Browne

et al. 2019

Briefings in Bioinformatics

128

100

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There has been an exponential growth in the performance and output of sequencing technologies (omics data) with full genome sequencing now producing gigabases of reads on a daily basis. These data may hold the promise of personalized medicine, leading to routinely available sequencing tests that can guide patient treatment decisions. In the era of high-throughput sequencing (HTS), computational considerations, data governance and clinical translation are the greatest rate-limiting steps. To ensure that the analysis, management and interpretation of such extensive omics data is exploited to its full potential, key factors, including sample sourcing, technology selection and computational expertise and resources, need to be considered, leading to an integrated set of high-performance tools and systems. This article provides an up-to-date overview of the evolution of HTS and the accompanying tools, infrastructure and data management approaches that are emerging in this space, which, if used within in a multidisciplinary context, may ultimately facilitate the development of personalized medicine.

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Legislation in the genomic era: the Affordable Care Act and genetic testing for cancer risk assessment

Cited by 9 publications

References 4 publications

Genetic Counseling Referral Rates in Long-Term Survivors of Triple-Negative Breast Cancer

Genetic Counseling Referral Rates in Long-Term Survivors of Triple-Negative Breast Cancer

Current status of hereditary breast and ovarian cancer practice among gynecologic oncologists in Japan: a nationwide survey by the Japan Society of Gynecologic Oncology (JSGO)

Review of applications of high-throughput sequencing in personalized medicine: barriers and facilitators of future progress in research and clinical application

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