Hereditary breast and ovarian cancer testing: integration and outcomes within community oncology practices

Eisenbraun, Ann J.; Wenstrup, Richard J.; Hellerstedt, Beth A.; Patton, Jeff; Reid, Julia; Sailer, Lisa M.; Copeland, Karen A. F.; Brunger, Jeanne W.; Hamilton, Stephanie; Frye, Cynthia; Sandbach, John F.

doi:10.1016/s1548-5315(11)70558-7

Cited by 3 publications

(3 citation statements)

References 28 publications

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“…Since the inception of genetic testing for hereditary breast/ovarian cancer, over 800,000 individuals have been tested for mutations in the BRCA1/2 genes (Myriad Genetics, personal communication, July 2012) and the annual number of tested individuals is rising. A recent study of community oncology practices found that 41 % of patients had sufficient risk factors to merit testing of deleterious BRCA1/ 2 mutations (Eisenbraun et al 2010).…”

Section: Introductionmentioning

confidence: 99%

Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice

Patenaude

DeMarco

Peshkin

et al. 2012

Journal of Genetic Counseling

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Family communication is the primary, initial means of educating the next, at-risk generation about hereditary cancer risk. In this study, in-depth parent narratives provided self-report of motivations, planning, satisfactions and regrets associated with sharing or not sharing maternal BRCA1/2 test results with young children and advice for parents considering disclosure and for genetic counselors. Interviews were conducted with 32 mothers tested for BRCA1/2 with children ages 8–21 years and 24 of their co-parents; interview narratives were analyzed qualitatively. Parents were concerned with both protecting and educating children about hereditary cancer risk. They expressed confidence that parents can constructively convey genetic information to minor children. Telling relieved most parents and satisfied a sense of parental duty. Parents strongly advised child-specific, age-appropriate tailoring of genetic information and emphasized conveying the positive, preventive utility of genetic information to children. Immunizing effects of disclosure were viewed as providing forewarning about and preparation for possible later family cancer diagnoses. Parents choosing not to tell children were advised to consider future disclosure. Narratives about parental sharing of BRCA1/2 test results with minor children support the feasibility of parental discussion of maternal genetic test results to the next at-risk generation. Results suggest development of intervention tools for parents would support decision-making and family communication and potentially reduce parental worry and regret. Recommendations are made for more active involvement by genetic counselors with tested parents around the topic of delivery of genetic information to children.

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Section: Introductionmentioning

confidence: 99%

Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice

Patenaude

DeMarco

Peshkin

et al. 2012

Journal of Genetic Counseling

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“…Thus, Myriad's general approach to ‘calling' VUS results is described, but neither analytic algorithms nor underlying sequence data are available. 9, 10, 11, 12, 13 This contrasts with recommendations of the National Academies in two reports that call for depositing data and methods sufficient for replication and interpretation. 14, 15 …”

Section: Data-sharing Practicesmentioning

confidence: 95%

“…In an environment in which new technologies, including whole-genome and whole-exome sequencing, are already beginning to change clinical practices in genetic testing, 9, 10, 11 a proprietary database gives Myriad indefinite exclusivity independent of patent protection. Even if Myriad's patents are invalidated (for a summary of the ongoing court challenge, see Supplementary materials), or new alternative testing technologies do not infringe them, until the data and interpretive algorithms are re-created in publicly accessible form, competing services will be able to manage VUS results in only two ways: by having samples analyzed at Myriad, where it is interpreted in light of Myriad's proprietary database, or by rendering inadequate interpretations based upon incomplete public data and algorithms.…”

Section: Interpreting Variants Of Unknown Significancementioning

confidence: 99%

The next controversy in genetic testing: clinical data as trade secrets?

et al. 2012

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Sole-source business models for genetic testing can create private databases containing information vital to interpreting the clinical significance of human genetic variations. But incomplete access to those databases threatens to impede the clinical interpretation of genomic medicine. National health systems and insurers, regulators, researchers, providers and patients all have a strong interest in ensuring broad access to information about the clinical significance of variants discovered through genetic testing. They can create incentives for sharing data and interpretive algorithms in several ways, including: promoting voluntary sharing; requiring laboratories to share as a condition of payment for or regulatory approval of laboratory services; establishing – and compelling participation in – resources that capture the information needed to interpret the data independent of company policies; and paying for sharing and interpretation in addition to paying for the test itself. US policies have failed to address the data-sharing issue. The entry of new and established firms into the European genetic testing market presents an opportunity to correct this failure.

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Breast Cancer Survivorship

Pederson¹,

Klemp

2018

The Breast

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Hereditary breast and ovarian cancer testing: integration and outcomes within community oncology practices

Cited by 3 publications

References 28 publications

Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice

Talking to Children About Maternal BRCA1/2 Genetic Test Results: A Qualitative Study of Parental Perceptions and Advice

The next controversy in genetic testing: clinical data as trade secrets?

Breast Cancer Survivorship

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