Cancer Risk Information Research Articles

Knowledge, Attitudes, and Beliefs of Arab‐American Women Regarding Inherited Cancer Risk

The increasing incidence of breast cancer in the Arab world, coupled with a relatively early age of onset, raises concern for the presence of hereditary risk factors in this population. However, due to potential structural and cultural barriers, Arab Americans make up the smallest percentage of individuals tested for Hereditary Breast and Ovarian Cancer Syndrome in the United States. The objectives of this qualitative pilot focus group of 13 Arab-American women were to explore attitudes, knowledge and beliefs regarding hereditary breast cancer in the Arab-American community in metropolitan Detroit, identify barriers that would prevent women from seeking hereditary cancer screening/testing and determine who women would talk to about inherited cancer. Results indicated that cultural beliefs and personal experiences with cancer influenced the women's perspectives on hereditary cancer risk. A high level of secrecy about cancer within Arab-American families was present, which may prevent accurate risk assessment and referral for genetic services. Other identified barriers that may influence hereditary risk assessment included stigma, fears and misconceptions of cancer. While these barriers were present, participants also expressed a strong need for education and tailored cancer risk information for their community.

Abstract FO02-02: Community-based participatory research for cancer prevention and control in African Americans.

Abstract Community-based participatory research (CBPR) is emerging as an important strategy for reducing cancer health disparities. CBPR is an approach that actively and meaningfully engages academic and community stakeholders in the development, implementation, and evaluation of programmatic efforts to improve health outcomes in a community. The West Philadelphia Consortium to Address Disparities was established with funding from the NIMHD to identify and address cancer health disparities among African Americans in the Philadelphia metropolitan area. As part of this partnership, we have evaluated the effects behavioral interventions to improve diet and physical activity, community-based approaches to increase access to information about cancer control through navigation, and compared the effects of alternate strategies for disseminating information about breast cancer prevention. This presentation will address several cross-cutting issues that are relevant to community-based approaches for reducing cancer health disparities. For instance, our findings demonstrate that while there are few barriers to using community-based navigation for cancer control and acceptance rates are high, with more than 70% of referred subjects completing navigation, subjects who believe that they are at high risk for developing cancer have a significantly lower likelihood of being a navigator acceptor. Further, while previous research has shown that cancer risk information is effective at motivating early detection for cancer, empirical data are limited on the effects of risk factor information on prevention behaviors, especially in populations that are at increased risk for developing other diseases that are consequences of physical inactivity and poor dietary behaviors. As part of this partnership, we conducted a randomized trial to evaluate the effects of integrated (IRC) versus disease-specific (DSC) risk factor education on lifestyle prevention behaviors in a community-based sample of African American adults (n=212). We predicted that IRC, or risk education that provided education about the overlap in behavioral risk factors for cancer and cardiovascular disease would lead to greater adherence rates compared to DSC, a protocol that only provided education about behavioral risk factors for cardiovascular disease. IRC was associated with increased adherence rates for fruit intake only (OR=1.85, 95% CI=0.99, 3.44, p=0.05) compared to DSC. At baseline, 37.4% of participants who were randomized to IRC met the recommended guidelines for fruit intake, but at follow-up 57.4% were adherent. There were no significant changes in adherence rates for fruit intake among those who were randomized to DSC (31.1% versus 41.5%). Our findings suggest that integrated risk factor education leads to improved behavioral prevention for some outcomes. Making multiple behavioral changes simultaneously may be difficult. Best practices for establishing and maintaining academic-community partnerships to address cancer health disparities and to sustain these efforts will also be discussed. Citation Format: Chanita Hughes Halbert, Vanessa Briggs, Scarlett Bellamy, Ernestine Delmoor, Jerry Johnson, Joseph Purnell, Rodney Rogers, Benita Weathers. Community-based participatory research for cancer prevention and control in African Americans. [abstract]. In: Proceedings of the Fifth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2012 Oct 27-30; San Diego, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2012;21(10 Suppl):Abstract nr FO02-02.

Avoiding Risk Information About Breast Cancer

Learning about personal risk can provide numerous benefits yet people sometimes opt to remain ignorant. Two studies examined the role of perceived control, coping resources, and anticipated regret in women's decision to avoid breast cancer risk information. Women completed a health inventory and then read a brochure about either controllable or uncontrollable predictors of breast cancer, or received no brochure. Participants then received an opportunity to learn their lifetime risk for breast cancer based on their inventory responses. Reading about controllable predictors of breast cancer reduced avoidance of risk information compared with reading about uncontrollable predictors or receiving no information. In addition, fewer coping resources, anticipated greater regret over seeking breast cancer risk information, and less regret over avoiding breast cancer risk information predicted information avoidance. Reading about controllable predictors of breast cancer reduces avoidance of breast cancer risk information.

Risk perception and knowledge of breast and colon cancers in a diverse population.

1563 Background: The accuracy of cancer risk perception has implications for preventive behaviors. Studies show that despite receiving personalized breast and colon cancer risk information, people continue to overestimate their numeric risks. It is still not fully understood why this occurs. Breast cancer, especially, is highly visible in the media so an individual may hear more about breast cancer, increasing general knowledge but potentially inflating risk perceptions. This study explores relationships between general knowledge and numeric risk perceptions for breast cancer (BC) and colon cancer (CC) among women. We hypothesize that general knowledge of BC will be high relative to CC, but risk perception for BC will be less accurate. Methods: Data was obtained from the first 369 (final N=490) patients recruited for the Kin Fact study from a Women’s Health Clinic. Kin Fact is a randomized controlled trial examining effects of an intervention to increase cancer risk communication in families. Women complete baseline surveys including knowledge and numeric risk perception measures for BC and CC. We use CA Gene software to calculate actual lifetime risk for BC and CC. Correlations, t-tests and linear regressions were used for the analysis. Results: Women averaged 33 years old, and 58% were African American. Average lifetime risk was 3% for CC and 11% for BC. Women overestimated their numeric risk for both BC and CC, but the mean overestimation for BC (24%) was significantly larger than for CC (19%) (p<0.001). Average scores for BC knowledge were also significantly higher than for CC (p<0.001). Compared to knowledge about CC, women who had greater knowledge of BC also were more inaccurate in terms of their perceived numeric risk (r= -0.131, p=0.016). This finding remained significant controlling for age, race and genetic literacy. Conclusions: Results endorse an apparently paradoxical effect that compared with CC, women with increased knowledge of BC have less accurate risk perception for BC. Inaccuracies in perceived risk can affect psychosocial well-being and adherence to screening and prevention recommendations. Findings reveal a need for increasing knowledge about cancer without adversely impacting the accuracy of risk perceptions.

‘Cancer doesn’t have an age’: Genetic testing and cancer risk management in BRCA1/2 mutation-positive women aged 18–24

Increasingly, 18-24-year-old women from hereditary breast/ovarian cancer (HBOC) families are pursuing genetic testing, despite their low absolute risks of breast and ovarian cancer and the fact that evidence-based management options used with older high-risk women are not generally available. Difficult clinical decisions in older carriers take on substantially more complexity and value-laden import in very young carriers. As a result, many of the latter receive highly personal and emotionally charged cancer risk information in a life context where management strategies are not well defined. We analyzed 32 in-depth interviews with BRCA1/2 mutation-positive women aged 18-24 using techniques of grounded theory and interpretive description. Participants described feeling vulnerable to a cancer diagnosis but in a quandary regarding their care because evidence-based approaches to management have not been developed and clinical trials have not been undertaken. Our participants demonstrated a wide range of genetic and health literacy. Inconsistent recommendations, surveillance fatigue, and the unpredictability of their having health insurance coverage for surgical risk-reducing procedures led several to contemplate risk-reducing mastectomy before age 25. Parents remained a primary source of emotional and financial support, slowing age-appropriate independence and complicating patient privacy. Our findings suggest that, for 18-24-year-olds, readiness to autonomously elect genetic testing, to fully understand and act on genetic information, and to confidently make decisions with life-long implications are all evolving processes. We comment on the tensions between informed consent, privacy, and the unique developmental needs of BRCA1/2 mutation-positive women just emerging into their adult years.

Principles in practice: Radiation regulation and the NRC

The US Nuclear Regulatory Commission uses quantitative radiogenic cancer risk information in a number of official areas. In this article, the authors describe two specific areas where quantitative cancer risk information is used: (1) the system of radiation protection for workers and the public, and (2) the performance of value-impact analysis (i.e., cost—benefit analysis) in the review of imposing new regulations on the industry. The authors write that two main factors have led to a change in the recommended occupational dose limit. First, the International Commission on Radiological Protection (ICRP) moved away from comparisons with safe industries, instead basing its assessment on cancer risk resulting from a lifetime of radiation exposure. The second factor is that additional epidemiological data have accumulated since 1977 and, combined with changes in the methods used to analyze this data, have resulted in a reassessment of the risk-per-unit radiation dose. The ICRP now recommends an annual occupational dose limit of 020 sievert. There was no corresponding change in the recommended dose limit for members of the public. Currently, the NRC is evaluating these changes and considering revising its regulations accordingly. Nonetheless, the authors write, dose limits play a very small role in modern radiation protection practices, the emphasis being on optimizing situations involving radiation exposure, with the result that most licensed facilities operate at annual doses to workers and members of the public that are well below any applicable limit.

P4-11-07: Feasibility and Acceptability of Offering Breast Cancer Risk Estimation in the Context of the UK National Health Service Breast Cancer Screening Programme: A New Paradigm for Cancer Prevention.

Abstract Background: Currently there are no real attempts internationally to tailor breast screening programmes to individual risk Methods: We have assessed the feasibility of collecting breast cancer risk information during routine mammographic screening in the National Health Service Breast Screening Programme (NHSBSP) in England, in order to consider, ultimately, adapting the screening interval to risk of breast cancer and introducing preventive strategies in women at high risk. The study Predicting Risk Of Cancer At Screening (PROCAS) aims to recruit 60,000 women over 3 years. Results: 26,000 women (June 8th 2011) have so far given consent to join the study. Thirty six percent of the first 20,000 women in nineteen screening sites in Manchester consented to enter the study and completed a risk factor questionnaire. The median 10 year breast cancer risk was 2.65%, with 926 (9.26%) of the first 10,000 women having a 10 year risk of ≥5% and 92 (0.92%) having a 10 year risk of ≥8% (Tyrer-Cuzick), IQR:1.35. 832 (8.32%) women had a mammographic density of 60% or greater (Visual Analogue Scale). We collected saliva samples from 1019 women for genetic analysis and will extend this to 18% of participants. Of those who agreed to participate in the study, 94% indicated that they wished to know their breast cancer risk. Women with a 10-year risk of ≥8%, and women with a 10-year risk of ≥5% and mammographic density ≥60% were invited to attend or be telephoned to be counselled. To date 138 have accepted with 135, so far, having received risk counselling. Nineteen percent of the high-risk women identified subsequently decided to enter a randomised breast cancer prevention study with either a dietary or drug intervention (IBIS2, anastrazole vs placebo). Results from the first 1,000 women who provided DNA samples suggest that the risk information from the 18 validated SNPS may enhance existing risk models. Conclusion: This study demonstrates that it is feasible to determine individual breast cancer risk and offer women appropriate risk-reducing interventions within the context of a population-based mammographic screening programme. Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P4-11-07.

Parenting Through Genetic Uncertainty: Themes in the Disclosure of Breast Cancer Risk Information to Children

Among mothers undergoing BRCA1/2 testing and their spouses/partners, this study sought to examine decision support needs and motivations for family communication of genetic risk information to asymptomatic children. This study gathered data from 213 tested mothers and 104 of their untested parenting partners 1 month after maternal receipt of genetic test results and upon making a decision about communicating genetic information to their child (ages 8-21 years). Data include parents' perceived needs for family communication decision support, decision motivations, and parent-child communication. Parents reported high decision support needs (e.g., educational materials, professional counseling, peer assistance). Motivations for disclosure to children among mothers and partners focused on promoting the parent-child bond and maintaining family health (55.3% and 75%, respectively) and promoting positive child affect (44.7% and 25.5%, respectively). Motivations for nondisclosure to children among mothers and partners focused on the lack of appropriateness (69.6% and 51.3%, respectively) and relative importance of genetic test results (30.4% and 48.7%, respectively). Significant discrepancies in parental motivation for family communication were observed. Decision support needs were highest among disclosing mothers with affect-related motivations [t (129)=2.47; p=0.01]. Parent-child communication was poorest among nondisclosing mothers concerned about the appropriateness of genetic information for their child [t (77)=-3.29; p=.002]. Parents receiving information about hereditary cancer predisposition have unmet needs when making decisions about disclosing genetic risk information to their asymptomatic children. These data can guide the development of cancer risk communication decision support interventions for parents undergoing such testing.

Promoting cancer screening within the patient centered medical home

While consensus has grown that primary care is the essential access point in a high-performing health care system, the current model of primary care underperforms in both chronic disease management and prevention. The Patient Centered Medical Home model (PCMH) is at the center of efforts to reinvent primary care practice, and is regarded as the most promising approach to addressing the burden of chronic disease, improving health outcomes, and reducing health spending. However, the potential for the medical home to improve the delivery of cancer screening (and preventive services in general) has received limited attention in both conceptualization and practice. Medical home demonstrations to date have included few evidence-based preventive services in their outcome measures, and few have evaluated the effect of different payment models. Decreasing use of hospitals and emergency rooms and an emphasis on improving chronic care represent improvements in effective delivery of healthcare, but leave opportunities for reducing the burden of cancer untouched. Data confirm that what does or does not happen in the primary care setting has a substantial impact on cancer outcomes. Insofar as cancer is the leading cause of death before age 80, the PCMH model must prioritize adherence to cancer screening according to recommended guidelines, and systems, financial incentives, and reimbursements must be aligned to achieve that goal. This article explores capacities that are needed in the medical home model to facilitate the integration of cancer screening and other preventive services. These capacities include improved patient access and communication, health risk assessments, periodic preventive health exams, use of registries that store cancer risk information and screening history, ability to track and follow up on tests and referrals, feedback on performance, and payment models that reward cancer screening.

Multidisciplinary high-risk program: A community hospital’s experience.

1562 Background: Women are seldom offered breast cancer risk assessment and information regarding risk reducing interventions at the time of their annual physical examination. Routinely assessing risk during mammography could identify women at high risk (HR) of breast cancer (BC). The Beaumont Risk Assessment Questionnaire (BRAQ) was implemented in 2009 as a way of improving identification of HR individuals. This study evaluates our overall experience with this process. Methods: Upon IRB approval, women ages 35-85 presenting for their annual screening mammogram were offered the BRAQ by a mammography tech. This questionnaire included the Modified Gail Risk Model (GM) and yes/no questions regarding family history and prior chest wall radiation. Women with a GM lifetime risk ≥ 20% or the presence of any noted risk factors were determined to be HR. These individuals were offered referral to our High Risk Program (HRP) for close surveillance and risk management. The primary care physician was noted of the risk assessment by the radiologists as part of the mammogram results. The HRP was designed to provide a multidisciplinary approach for management and long term follow up of these HR women. A retrospective data review was conducted on 5,878 women (males were excluded) from three imaging locations from September 2009 to August 2010. Results: A total of 5,878 women agreed to complete the BRAQ. There were 5353 women completing enough information to determine lifetime GM. 17.2% (922) were found to be HR. At two of our three locations, a significant number declined participation (up to 34.2%). Mean age of participants was 55+/-11, 84.9% (4990) were Caucasian, 6.8% (400) were African American and 8.2% (487) were of other ethnicities. Of all 5878, 0.9% (53) women had undergone prior chest radiation. 46% (2678) had at least one first degree relative with BC. 4% (217) had a male relative with BC, 22%(1271) had 3 or more BC on one side of their family, 33% (1960) had a BC and ovarian cancer on one side, and 11% (677) noted 2 BC’s on the same side with onset under age 50. Conclusions: Identification of women at risk for BC is an integral component of comprehensive breast care. Our experience proves that this identification can be easily incorporated into a screening mammography visit.

Delivery of Internet-based cancer genetic counselling services to patients' homes: a feasibility study

We examined the feasibility of home videoconferencing for providing cancer genetic education and risk information to people at risk. Adults with possible hereditary colon or breast and ovarian cancer syndromes were offered Internet-based counselling. Participants were sent web cameras and software to install on their home PCs. They watched a prerecorded educational video and then took part in a live counselling session with a genetic counsellor. A total of 31 participants took part in Internet counselling sessions. Satisfaction with counselling was high in all domains studied, including technical (mean 4.3 on a 1-5 scale), education (mean 4.7), communication (mean 4.8), psychosocial (mean 4.1) and overall (mean 4.2). Qualitative data identified technical aspects that could be improved. All participants reported that they would recommend Internet-based counselling to others. Internet-based genetic counselling is feasible and associated with a high level of satisfaction among participants.

Risky feelings: Why a 6% risk of cancer does not always feel like 6%

Objective Emotion plays a strong role in the perception of risk information but is frequently underemphasized in the decision-making and communication literature. We sought to discuss and put into context several lines of research that have explored the links between emotion and risk perceptions. Methods In this article, we provide a focused, “state of the science” review of research revealing the ways that emotion, or affect, influences people's cancer-related decisions. We identify illustrative experimental research studies that demonstrate the role of affect in people's estimates of cancer risk, their decisions between different cancer treatments, their perceptions of the chance of cancer recurrence, and their reactions to different methods of presenting risk information. Results These studies show that people have strong affective reactions to cancer risk information and that the way risk information is presented often determines the emotional gist people take away from such communications. Conclusion Cancer researchers, educators and oncologists need to be aware that emotions are often more influential in decision making about cancer treatments and prevention behaviors than factual knowledge is. Practice implications Anticipating and assessing affective reactions is an essential step in the evaluation and improvement of cancer risk communications.

Enhanced counselling for women undergoing BRCA1/2 testing: Impact on knowledge and psychological distress–results from a randomised clinical trial

This randomised controlled trial evaluated the impact of an enhanced counselling (EC) intervention on knowledge about the heritability of breast and ovarian cancer and distress, as a function of BRCA test result, among high-risk women. Before deciding about whether or not to undergo genetic testing, participants were randomly assigned to the EC intervention (N = 69), designed to promote cognitive and affective processing of cancer risk information (following the standard individualised counselling session), or to the control condition (N = 65), which involved standard individualised counselling followed by a general health information session to control for time and attention. Women in the EC group exhibited greater knowledge than women in the control group, 1 week after the intervention. Further, at the affective level, the intervention was found to be the most beneficial for women testing positive: specifically 1 week after test result disclosure, women in the intervention group who tested positive experienced lower levels of distress than women in the control group who tested positive. The findings suggest that the design of counselling aids should include a component that explicitly activates the individual's cognitive–affective processing system.

Perceived cancer risk: why is it lower among nonwhites than whites?

We explored racial/ethnic differences in perceived cancer risk and determinants of these differences in a nationally representative sample of whites, blacks, Hispanics, and Asians. Multiple regression techniques, including mediational analyses, were used to identify determinants and quantify racial/ethnic differences in the perception of the risk of developing cancer among 5,581 adult respondents to the 2007 Health Information Trends Survey (HINTS). Blacks, Hispanics, and Asians reported lower perceived cancer risk than whites [Bs = -0.40, -0.34, and -0.69, respectively; (Ps < 0.001)]. Contributing factors included relatively lower likelihood of reporting a family history of cancer, lower likelihood of having smoked, and a less strong belief that everything causes cancer among nonwhites than among whites. Racial/ethnic differences in perceived risk were attenuated in older respondents because perceived cancer risk was negatively associated with age for whites but not for nonwhites. Nonwhites had lower perceptions of cancer risk than whites. Some of the racial/ethnic variability in perceived risk may be due to racial and ethnic differences in awareness of one's family history of cancer and its relevance for cancer risk, experiences with behavioral risk factors, and salience of cancer risk information.

Controversies in Communication of Genetic Screening Results for Cancer: A Report from the American Society of Preventive Oncology's Screening Special Interest Group (ASPO's 33rd Annual Meeting, March 8 to 10, 2009, Tampa, Florida)

Genetic screening for cancer susceptibility for many cancer sites has become routine for high-risk populations, particularly breast, ovarian, and colon cancer. Such genetic tests hold great promise for informing tailored cancer prevention and risk reduction recommendations. Heightened consumer

Young women's responses to smoking and breast cancer risk information.

Current evidence confirms that young women who smoke or who have regular long-term exposure to secondhand smoke (SHS) have an increased risk of developing premenopausal breast cancer. The aim of this research was to examine the responses of young women to health information about the links between active smoking and SHS exposure and breast cancer and obtain their advice about messaging approaches. Data were collected in focus groups with 46 women, divided in three age cohorts: 15–17, 18–19 and 20–24 and organized according to smoking status (smoking, non-smoking and mixed smoking status groups). The discussion questions were preceded by information about passive and active smoking and its associated breast cancer risk. The study findings show young women's interest in this risk factor for breast cancer. Three themes were drawn from the analysis: making sense of the information on smoking and breast cancer, personal susceptibility and tobacco exposure and suggestions for increasing awareness about tobacco exposure and breast cancer. There was general consensus on framing public awareness messages about this risk factor on ‘protecting others’ from breast cancer to catch smokers’ attention, providing young women with the facts and personal stories of breast cancer to help establish a personal connection with this information and overcome desensitization related to tobacco messages, and targeting all smokers who may place young women at risk. Cautions were also raised about the potential for stigmatization. Implications for raising awareness about this modifiable risk factor for breast cancer are discussed.

Comprehension of Internet-based numeric cancer information by older adults

Competency in health numeracy is essential in understanding risk about disease susceptibility and the consequences of disease treatment. Both health literacy and skill in using the Internet to obtain health information are lower among older compared with younger adults. Presentation format of health information has been shown to influence comprehension. The objective of this study was to determine the influence of information formatting (text and graphic) on older adults' comprehension of Internet-based numeric cancer risk information. This cross-sectional study involved a convenience sample of adults, aged 50 years and older from diverse ethnic and educational backgrounds. Cancer risk information, obtained from a Canadian Cancer Society web page, was presented as text, graphics or as a combination of text and graphics formats. Comprehension of the information was assessed by six questions focused on basic numeracy skill and ability to perform simple calculations and operations. A three-item general context numeracy and an eight-item health context numeracy instrument were used to describe health numeracy skills of participants. The six-item Newest Vital Sign (NVS) test was used to assess prose and numeric health literacy. There was no statistically significant effect of presentation format on participants' comprehension of the cancer information. Participants' comprehension of basic health numeracy information was positively correlated with education (p ≤ 0.05) and income (p ≤ 0.01) whereas comprehension of information that assessed calculation and operations numeracy skill was positively correlated only with income (p ≤ 0.05). Health literacy skill and income explained a significant proportion of the variance in overall comprehension of Internet-based cancer risk information (R2 = 0.414, p ≤ 0.01) in this sample of older adults. Format of numeric risk information was not a significant factor in the comprehension of cancer risk information in this group of ethnically diverse, older adults. However, comprehension of the information was related to health literacy skill and income.

Does Presenting Colorectal Cancer Risk Information Increase Colorectal Cancer Screening Rates in Primary Care Patients?

Purpose: Although colorectal cancer (CRC) screening is recommended in the U.S. for all adults age 50 and over, actual screening rates fall short of this target. This study evaluated the effectiveness of presenting an individualized bar graph of CRC risk versus a standard screening handout of increasing screening rates in a primary care setting. Methods: Outpatient records were reviewed to identify potential subjects: no prior documented screening and age >50. Potential subjects were scheduled for a routine visit in a university-based primary care clinic and were determined to be at above-average risk for CRC based on 1 or more of the following 4 risk factors: body mass index (BMI) > 27, having inflammatory bowel disease for more than 10 years, lack of folic acid supplementation, and 1 or more first degree relative with CRC. 1147 subjects were approached to determine eligibility. 210 (38%) out of 557 eligible subjects were randomized to receive from clinic staff either individualized CRC risk information presented as a bar graph and calculated from the Harvard Cancer Risk Index or a standard CRC screening handout from the CDC. All subjects were offered fecal occult blood tests (FOBT) cards and an appointment for a flexible sigmoidoscopy (FS). Chart audits were completed 6 months after index visit. Outcome measures included the number of subjects completing any CRC screening test (FOBT, FS, and/or colonoscopy). Results: The intervention group had a mean age of 55.7±4.8 and BMI of 32.0 ± 8.1 and the control group had a mean age of 55.6±4.6 and BMI of 31.3 ± 6.9. There were 67% females in each group, and there were 57% white subjects and 46% black subjects in the intervention group and 49% white subjects and 50% black subjects in the control group (p=.400). 75% of intervention subjects and 76% of control subjects were willing to take FOBT cards home (p=0.961), but only 7% of intervention subjects and 11% of control subjects completed FOBT cards (p=0.381). No subjects completed FS. 22% of intervention subjects and 23% of control subjects completed colonoscopy (p=0.951). A total of 28% of intervention subjects and 30% of control subjects completed 1 or more CRC screening test (p=0.661). Conclusion: Presentation of individualized CRC risk information by clinic staff does not result in higher CRC screening rates in primary care patients than the simple provision of general CRC screening information. Future research is needed to determine if physician presentation of CRC risk information would result in increasing screening rates.

337 Targeting DNA-repair deficiency in mouse models for BRCA- associated breast cancer

The identification of the breast cancer susceptibility genes BRCA1 and BRCA2 a few years ago has been greeted with great excitement and has raised hopes that they might illuminate the common mechanisms of this disease. Today we have to recognize that these expectations remain unfulfilled. Mutations in BRCA1 and BRCA2 account only for a relatively small proportion of breast cancers, even within the group of familiar clusters, they seem to be virtually non-existing in sporadic breast cancers. A substantial proportion of familiar breast cancer clusters has failed to provide evidence for an association with mutations in either BRCA1 or BRCA2, thus we have to look forward to the identification of additional breast cancer susceptibility genes. What has been most disappointing is that the mutation status of BRCA1/2 can provide only limited information for cancer risk. Initial assessments had indicated a risk of close to 90% for mutation carriers to develop breast cancer until age 75 – a value that turned out to be restricted to high-risk families in which the BRCA1 and BRCA2 genes had been genomically mapped. In unselected clusters the risk appears much lower, some estimates suggest less than 40%. Both BRCA1 and BRCA2 large encode proteins that appear to have a plethora of functions, with a conspicuous association to DNA repair and DNA recombination, and probably transcription activation. Defects in DNA repair can result in cancer predisposition syndromes and are recognized as being instrumental in cancer progression. Central questions have remained unanswered: What is the function of damaged BRCA1 and BRCA2 genes in breast cancer risk? What is the basis of large variations of risk conferred to the patients by identical mutations? How can the predictive value of mutation surveys be increased?

On the development of a decision support intervention for mothers undergoing BRCA1/2 cancer genetic testing regarding communicating test results to their children.

Parent communication of BRCA1/2 test results to minor-age children is an important, yet understudied, clinical issue that is commonly raised in the management of familial cancer risk. Genetic counseling professionals and others who work with parents undergoing this form of testing often confront questions about the risks/benefits and timing of such disclosures, as well as the psychosocial impact of disclosure and nondisclosure on children's health and development. This paper briefly reviews literature on the prevalence and outcome of parent-child communication surrounding maternal BRCA1/2 test results. It also describes a formative research process that was used to develop a decision support intervention for mothers participating in genetic counseling and testing for BRCA1/2 mutations to address this issue, and highlights the conceptual underpinnings that guided and informed the intervention's development. The intervention consists of a print-based decision aid to facilitate parent education and counseling regarding if, when, and potentially how to disclose hereditary cancer risk information to children. We conclude with a summary of the role of social, behavioral, and decision science research to support the efforts of providers of familial cancer care regarding this important decision, and to improve the outcomes of cancer genetic testing for tested parents and their nontested children.