Online BRCA1/2 screening in the Australian Jewish community: a qualitative study

Yuen, Jeanette; Cousens, Nicole E; Barlow‐Stewart, Kristine; O’Shea, Rosie; Andrews, Lesley

doi:10.1007/s12687-019-00450-7

Cited by 13 publications

(13 citation statements)

References 51 publications

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“…Israeli and Canadian Jewish population studies provided only 'pre-test information' and post-test genetic counselling for BRCA carriers, with >90% satisfaction rates [39,40]. An Australian Jewish population [41] and a UK general population study have demonstrated the feasibility of an online web-based decision aid (along with an optional telephone helpline) pre-test education and consent process [42].…”

Section: Discussionmentioning

confidence: 99%

Economic Evaluation of Population-Based BRCA1/BRCA2 Mutation Testing across Multiple Countries and Health Systems

Manchanda

Sun

Patel

et al. 2020

Cancers

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Clinical criteria/Family history-based BRCA testing misses a large proportion of BRCA carriers who can benefit from screening/prevention. We estimate the cost-effectiveness of population-based BRCA testing in general population women across different countries/health systems. A Markov model comparing the lifetime costs and effects of BRCA1/BRCA2 testing all general population women ≥30 years compared with clinical criteria/FH-based testing. Separate analyses are undertaken for the UK/USA/Netherlands (high-income countries/HIC), China/Brazil (upper–middle income countries/UMIC) and India (low–middle income countries/LMIC) using both health system/payer and societal perspectives. BRCA carriers undergo appropriate screening/prevention interventions to reduce breast cancer (BC) and ovarian cancer (OC) risk. Outcomes include OC, BC, and additional heart disease deaths and incremental cost-effectiveness ratio (ICER)/quality-adjusted life year (QALY). Probabilistic/one-way sensitivity analyses evaluate model uncertainty. For the base case, from a societal perspective, we found that population-based BRCA testing is cost-saving in HIC (UK-ICER = $−5639/QALY; USA-ICER = $−4018/QALY; Netherlands-ICER = $−11,433/QALY), and it appears cost-effective in UMIC (China-ICER = $18,066/QALY; Brazil-ICER = $13,579/QALY), but it is not cost-effective in LMIC (India-ICER = $23,031/QALY). From a payer perspective, population-based BRCA testing is highly cost-effective in HIC (UK-ICER = $21,191/QALY, USA-ICER = $16,552/QALY, Netherlands-ICER = $25,215/QALY), and it is cost-effective in UMIC (China-ICER = $23,485/QALY, Brazil−ICER = $20,995/QALY), but it is not cost-effective in LMIC (India-ICER = $32,217/QALY). BRCA testing costs below $172/test (ICER = $19,685/QALY), which makes it cost-effective (from a societal perspective) for LMIC/India. Population-based BRCA testing can prevent an additional 2319 to 2666 BC and 327 to 449 OC cases per million women than the current clinical strategy. Findings suggest that population-based BRCA testing for countries evaluated is extremely cost-effective across HIC/UMIC health systems, is cost-saving for HIC health systems from a societal perspective, and can prevent tens of thousands more BC/OC cases.

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Section: Discussionmentioning

confidence: 99%

Economic Evaluation of Population-Based BRCA1/BRCA2 Mutation Testing across Multiple Countries and Health Systems

Manchanda

Sun

Patel

et al. 2020

Cancers

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“…Healthcare funders and planners of genomic medicine services need to carefully consider the availability of access to genetic counselors before sequencing is introduced into routine clinical practice. Research shows patients are open to alternatives to traditional, face-to-face genetic counseling, such as group sessions or over the telephone [28,38], and recently through online platforms [39]. Such alternatives to face-to-face, individual sessions might offer a compromise between patients' desire for genetic counseling and the healthcare system's lack of resources to provide it.…”

Section: Discussion/conclusionmentioning

confidence: 99%

Identifying Aspects of Public Attitudes Toward Whole Genome Sequencing to Inform the Integration of Genomics into Care

Etchegary

Pullman

Simmonds

et al. 2021

Public Health Genomics

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Introduction: The growth of global sequencing initiatives and commercial genomic test offerings suggests the public will increasingly be confronted with decisions about sequencing. Understanding public attitudes can assist efforts to integrate sequencing into care and inform the development of public education and outreach strategies. Methods: A 48-item online survey was advertised on Facebook in Eastern Canada and hosted on SurveyMonkey in late 2018. The survey measured public interest in whole genome sequencing and attitudes toward various aspects of sequencing using vignettes, scaled, and open-ended items. Results: While interest in sequencing was high, critical attitudes were observed. In particular, items measuring features of patient control and choice regarding genomic data were strongly endorsed by respondents. Majority wanted to specify upfront how their data could be used, retain the ability to withdraw their sample at a later date, sign a written consent form, and speak to a genetic counselor prior to sequencing. Concerns about privacy and unauthorized access to data were frequently observed. Education level was the sociodemographic variable most often related to attitude statements such that those with higher levels of education generally displayed more critical attitudes. Conclusions: Attitudes identified here could be used to inform the development of implementation strategies for genomic medicine. Findings suggest health systems must address patient concerns about privacy, consent practices, and the strong desire to control what happens to their genomic data through public outreach and education. Specific oversight procedures and policies that are clearly communicated to the public will be required.

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“…A pilot UK study demonstrated feasibility of using a web-based decision aid and telephone helpline for population testing feasibility of this approach [78] and a recent AJ population study has also used an online pretest education and consent process. [79] Most studies opted to provide individual face-to-face post-test counselling for those with pathogenic mutations or very strong family histories. Rowley et al was the only study to not conduct this.…”

Section: What Type Of Genetic Counselling Is Appropriate For Pbgt?mentioning

confidence: 99%

Population-based genetic testing for Women's cancer prevention

Evans

Gaba

Manchanda

2020

Best Practice & Research Clinical Obstetrics & Gynaecol

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Germline mutations in cancer-susceptibility-genes (CSG) can dramatically increase women's lifetime risk of ovarian, endometrial, breast and bowel cancers. Identification of unaffected carriers is important to enable proactive engagement with highly effective screening and preventive options to minimise cancer risk. Currently a family-history model, is used to identify individuals with CSGs.Complex regional referral guidelines, specify the family-history criteria required before an individual is eligible for genetic-testing. This model is ineffective, resource intense, misses >50% CSG carriers, is associated with underutilisation of genetic-testing services and delays detection of mutation carriers.Although awareness and detection of CSG-carriers has improved, over 97% carriers remain unidentified. This reflects significant missed opportunities for precision-prevention. Population-based genetic-testing (PBGT) represents a novel healthcare strategy with the potential to dramatically improve detection of unaffected CSG-carriers along-with enabling population risk-stratification for cancer precision-prevention. Several research studies have assessed the impact, feasibility, acceptability, long-term psychological outcomes and cost-effectiveness of population-based BRCAtesting in the Ashkenazi-Jewish population. Initial data on PBGT in the general-population is beginning to emerge and large implementation studies investigating PBGT in the general-population are needed. This review will summarise the current research into the clinical, psycho-social, health-economic, societal and ethical consequences of a PBGT model for women's cancer precision-prevention.

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Online BRCA1/2 screening in the Australian Jewish community: a qualitative study

Cited by 13 publications

References 51 publications

Economic Evaluation of Population-Based BRCA1/BRCA2 Mutation Testing across Multiple Countries and Health Systems

Economic Evaluation of Population-Based BRCA1/BRCA2 Mutation Testing across Multiple Countries and Health Systems

Identifying Aspects of Public Attitudes Toward Whole Genome Sequencing to Inform the Integration of Genomics into Care

Population-based genetic testing for Women's cancer prevention

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