Toward a Population-Based Breast Cancer Risk Stratification Approach? The Needs and Concerns of Healthcare Providers.

Given the expanding knowledge base in cancer genomics, risk-based screening is among the promising avenues to improve breast cancer (BC) prevention and early detection at the population level. Semi-structured interviews were conducted to explore the perceptions of healthcare professionals (HPs) regarding the implementation of such an approach and identify tools that can support HPs. After undertaking an in-depth thematic content analysis of the responses, 11 themes were identified. These were embedded into a logical model to distinguish the potential eligible participants (who?), the main clinical activities (how?) and associated tools (what?), the key factors of acceptability (which?), and the expected effects of the strategy (why?). Overall, it was found that the respondents positively welcomed the implementation of this strategy and agreed on some of the benefits that could accrue to women from tailored risk-based screening. Some important elements, however, deserve clarification. The results also highlight three main conditions that should be met to foster the acceptability of BC risk stratification: respecting the principle of equity, paying special attention to knowledge management, and rethinking human resources to capitalize on the strengths of the current workforce. Because the functioning of BC risk-based screening is not yet well defined, important planning work is required before advancing this organizational innovation, and outstanding issues must be resolved to get HPs on board.

Disentangling the determinants of interest and willingness-to-pay for breast cancer susceptibility testing in the general population: a cross-sectional Web-based survey among women of Québec (Canada).

OBJECTIVES: To identify common and specific individual factors that favour or impede women's interest in and willingness-to-pay (WTP) for breast cancer susceptibility testing (BCST) and to identify the most impactful factors on both outcome measures. DESIGN AND METHODS: This study used a self-administered cross-sectional Web-based questionnaire that included hypothetical scenarios about the availability of a new genetic test for breast cancer. PARTICIPANTS: French-speaking women of the general population of Québec (Canada), aged between 35 and 69 years, were identified from a Web-based panel (2410 met the selection criteria, 1160 were reached and 1031 completed the survey). MEASURES: The outcomes are the level of interest in and the range of WTP for BCST. Three categories of individual factors identified in the literature were used as potential explanatory factors, that is, demographic, clinical and psychosocial. RESULTS: Descriptive statistics indicated that the vast majority of sampled women are interested in BCST (90%). Among those, more than half of them are willing-to-pay for such a test (57%). The regression models pointed out several factors associated with both outcomes (eg, age, income, family history, locus of control-powerful others) and marginal effects were used to highlight the most impactful factors for each outcome. CONCLUSION: The results of this study provide a proxy of the readiness of women of the general population to use and to pay for BCST. They also offer insights for developing inclusive and specific strategies to foster informed decision-making and guide the services offered by health organisations corresponding to women's preferences and needs.

Breast Cancer Risk Estimation and Personal Insurance: A Qualitative Study Presenting Perspectives from Canadian Patients and Decision Makers.

Genetic stratification approaches in personalized medicine may considerably improve our ability to predict breast cancer risk for women at higher risk of developing breast cancer. Notwithstanding these advantages, concerns have been raised about the use of the genetic information derived in these processes, outside of the research and medical health care settings, by third parties such as insurers. Indeed, insurance applicants are asked to consent to insurers accessing their medical information (implicitly including genetic) to verify or determine their insurability level, or eligibility to certain insurance products. This use of genetic information may result in the differential treatment of individuals based on their genetic information, which could lead to higher premium, exclusionary clauses or even the denial of coverage. This phenomenon has been commonly referred to as "Genetic Discrimination" (GD). In the Canadian context, where federal Bill S-201, An Act to prohibit and prevent genetic discrimination, has recently been enacted but may be subject to constitutional challenges, information about potential risks to insurability may raise issues in the clinical context. We conducted a survey with women in Quebec who have never been diagnosed with breast cancer to document their perspectives. We complemented the research with data from 14 semi-structured interviews with decision-makers in Quebec to discuss institutional issues raised by the use of genetic information by insurers. Our results provide findings on five main issues: (1) the reluctance to undergo genetic screening test due to insurability concerns, (2) insurers' interest in genetic information, (3) the duty to disclose genetic information to insurers, (4) the disclosure of potential impacts on insurability before genetic testing, and (5) the status of genetic information compared to other health data. Overall, both groups of participants (the women surveyed and the decision-makers interviewed) acknowledged having concerns about GD and reported a need for better communication tools discussing insurability risk. Our conclusions regarding concerns about GD and the need for better communication tools in the clinical setting may be transferable to the broader Canadian context.

The knowledge value-chain of genetic counseling for breast cancer: an empirical assessment of prediction and communication processes.

The aim of this paper is twofold: to analyze the genetic counseling process for breast cancer with a theoretical knowledge transfer lens and to compare generalists, medical specialists, and genetic counselors with regards to their genetic counseling practices. This paper presents the genetic counseling process occurring within a chain of value-adding activities of four main stages describing health professionals' clinical practices: (1) evaluation, (2) investigation, (3) information, and (4) decision. It also presents the results of a cross-sectional study based on a Canadian medical doctors and genetic counselors survey (n = 176) realized between July 2012 and March 2013. The statistical exercise included descriptive statistics, one-way ANOVA and post-hoc tests. The results indicate that even though all types of health professionals are involved in the entire process of genetic counseling for breast cancer, genetic counselors are more involved in the evaluation of breast cancer risk, while medical doctors are more active in the decision toward breast cancer risk management strategies. The results secondly demonstrate the relevance and the key role of genetic counselors in the care provided to women at-risk of familial breast cancer. This paper presents an integrative framework to understand the current process of genetic counseling for breast cancer in Canada, and to shed light on how and where health professionals contribute to the process. It also offers a starting point for assessing clinical practices in genetic counseling in order to establish more clearly where and to what extent efforts should be undertaken to implement future genetic services.

Medical genetic counseling for breast cancer in primary care: a synthesis of major determinants of physicians' practices in primary care settings.

OBJECTIVES: This paper aims to identify relevant potential predictors of medical genetic counseling for breast cancer (MGC-BC) in primary care and to develop a comprehensive questionnaire to study MGC-BC. METHODS: A scoping review was conducted to identify the predictors of MGC-BC among primary care physicians. Relevant articles were identified in selected databases (PubMed, Embase, CINAHL, ISI Web of Science, PsycINFO, and Cochrane CENTRAL) and 4 selected relevant electronic journals. RESULTS: An inductive analysis of the 193 quantitatively tested variables, conducted by 3 researchers, showed that 6 conceptual categories of determinants, namely (1) demographic, (2) organizational, (3) experiential, (4) professional, (5) psychological, and (6) cognitive, influence MGC-BC practices. CONCLUSION: There is a scarcity of literature addressing the medical behavior determinants of MGC-BC. Future research is needed to identify effective strategies put into action to support the integration of MGC-BC in primary care medical practices and routines. However, our results shed light on 2 levels of actions that could improve genetic counseling services in primary care: (1) medical training and educational efforts emphasizing family history collection (individual level), and (2) clarification of roles and responsibilities in ordering and referral practices in genetic counseling and genetic testing for better healthcare management (organizational level).