Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center

Ready, Kaylene; Arun, Banu K.; Schmeler, Kathleen M.; Uyei, Anne; Litton, Jennifer K.; Lu, Karen H.; Sun, Charlotte C.; Peterson, Susan K.

doi:10.1007/s10689-011-9460-z

Cited by 6 publications

(9 citation statements)

References 38 publications

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“…However, prior studies suggest that the majority of test result disclosures with first-degree relatives occurs within weeks to a few months of when the proband receives their test results [43, 47]. Similarly, we observed consistent rates of communication with health care providers between our study and one that included breast cancer survivors who were several years from the time of testing [51]. This implies that if communication does not occur early, it will not likely occur later.…”

Section: Discussionsupporting

confidence: 80%

“…The frequency of sharing results (40–49%) is similar to another study that examined sharing of BRCA genetic test results with nononcology health care providers (30–44%) [51]. It is noteworthy that although patients in our study were only ~5 months from receiving test results, compared to the other study where participants may have been several years from testing (as early as 1997), rates of test result disclosure were similar for both populations; this suggests low rates of disclosure with primary care providers may persist over time.…”

Section: Discussionsupporting

confidence: 75%

See 1 more Smart Citation

Do Breast Cancer Patients Tested in the Oncology Care Setting ShareBRCAMutation Results with Family Members and Health Care Providers?

Vadaparampil

Malo

Cruz

et al. 2012

Journal of Cancer Epidemiology

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BRCA genetic test results provide important information to manage cancer risk for patients and their families. Little is known on the communication of genetic test results by mutation status with family members and physicians in the oncology care setting. As part of a longitudinal study evaluating the impact of genetic counseling and testing among recently diagnosed breast cancer patients, we collected patients' self-reported patterns of disclosure. Descriptive statistics characterized the sample and determined the prevalence of disclosure of BRCA test results to family members and physicians. Of 100 patients who completed the baseline and the 6-month followup survey, 77 reported pursuing testing. The majority shared test results with female first-degree relatives; fewer did with males. Participants were more likely to share results with oncologists compared to surgeons, primary care physicians, or other specialty physicians. These findings suggest that while breast cancer patients may communicate results to at-risk female family members and their medical oncologist, they may need education and support to facilitate communication to other first-degree relatives and providers.

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Section: Discussionsupporting

confidence: 80%

Section: Discussionsupporting

confidence: 75%

Do Breast Cancer Patients Tested in the Oncology Care Setting ShareBRCAMutation Results with Family Members and Health Care Providers?

Vadaparampil

Malo

Cruz

et al. 2012

Journal of Cancer Epidemiology

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“…Recent studies suggest that concerns regarding genetic discrimination in health insurance and employment persist in the post-GINA era (Shostak et al 2011;Laedtke et al 2012;Bernhardt et al 2011). This suggests a continued need for educational efforts, although there is some evidence indicating those concerns are waning among patients and healthcare providers (Ready et al 2011;Matloff et al 2013;Huizenga et al 2010).…”

Section: Discussionmentioning

confidence: 99%

Public Awareness of Genetic Nondiscrimination Laws in Four States and Perceived Importance of Life Insurance Protections

Parkman

Foland

Anderson

et al. 2014

Journal of Genetic Counseling

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Genetic testing has grown dramatically in the past decade and is becoming an integral part of health care. Genetic nondiscrimination laws have been passed in many states, and the Genetic Information Nondiscrimination Act (GINA) was passed at the federal level in 2008. These laws generally protect individuals from discrimination by health insurers or employers based on genetic information, including test results. In 2010, Connecticut, Michigan, Ohio, and Oregon added four questions to their Behavioral Risk Factor Surveillance System (BRFSS) survey to assess interest in genetic testing, awareness of genetic nondiscrimination laws, concern about genetic discrimination in determining life insurance eligibility and cost, and perceived importance of genetic nondiscrimination laws that address life insurance. Survey results showed that awareness of genetic nondiscrimination laws was low (less than 20 % of the adult population), while perceived importance of these types of laws was high (over 80 % of respondents rated them as very or somewhat important). Over two-thirds of respondents indicated they were very or somewhat concerned about life insurance companies using genetic test results to determine life insurance coverage and costs. Results indicate a need for more public education to raise awareness of protections provided through current genetic nondiscrimination laws. The high rate of concern about life insurance discrimination indicates an additional need for continued dialogue regarding the extent of legal protections in genetic nondiscrimination laws.

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“…High-risk programs should obtain approval from patients and institutions to share very sensitive information and should create an information-sharing system that protects patient privacy 99. Such a system is particularly important in the case of referral or assessment of patients who live outside the city or country where the high-risk program is located.…”

Section: Legal Issues and Confidentialitymentioning

confidence: 99%

Establishing a Program for Individuals at High Risk for Breast Cancer

Cádiz¹,

Kuerer²,

Puga³

et al. 2013

J. Cancer

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Our need to create a program for individuals at high risk for breast cancer development led us to research the available data on such programs. In this paper, we summarize our findings and our thinking process as we developed our own program.Breast cancer incidence is increasing worldwide. Even though there are known risk factors for breast cancer development, approximately 60% of patients with breast cancer have no known risk factor, although this situation will probably change with further research, especially in genetics. For patients with risk factors based on personal or family history, different models are available for assessing and quantifying risk. Assignment of risk levels permits tailored screening and risk reduction strategies. Potential benefits of specialized programs for women with high breast cancer risk include more cost -effective interventions as a result of patient stratification on the basis of risk; generation of valuable data to advance science; and differentiation of breast programs from other breast cancer units, which can result in increased revenue that can be directed to further improvements in patient care.Guidelines for care of patients at high risk for breast cancer are available from various groups. However, running a high-risk breast program involves much more than applying a guideline. Each high-risk program needs to be designed by its institution with consideration of local resources and country legislation, especially related to genetic issues. Development of a successful high-risk program includes identifying strengths, weaknesses, opportunities, and threats; developing a promotion plan; choosing a risk assessment tool; defining “high risk”; and planning screening and risk reduction strategies for the specific population served by the program. The information in this article may be useful for other institutions considering creation of programs for patients with high breast cancer risk.

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Communication of BRCA1 and BRCA2 genetic test results to health care providers following genetic testing at a tertiary care center

Cited by 6 publications

References 38 publications

Do Breast Cancer Patients Tested in the Oncology Care Setting ShareBRCAMutation Results with Family Members and Health Care Providers?

Do Breast Cancer Patients Tested in the Oncology Care Setting ShareBRCAMutation Results with Family Members and Health Care Providers?

Public Awareness of Genetic Nondiscrimination Laws in Four States and Perceived Importance of Life Insurance Protections

Establishing a Program for Individuals at High Risk for Breast Cancer

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