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Research shows genetic counselors generally have pro‐White implicit biases—both prejudice and stereotyping. Cultural competency training aims to foster equitable beliefs, behaviors, and attitudes in cross‐cultural genetic counseling sessions, including those that are racially discordant (genetic counselors and patients are from different racial backgrounds). Therefore, cultural competency training has the potential to mitigate bias and reduce disparities. Here, we report the prevalence of cultural competency training among genetic counselors and associations between recency of training and counselors' racial biases. We conducted an online survey of genetic counselors and trainees in fall 2021. The survey assessed four types of bias (implicit/explicit prejudice and implicit/explicit stereotyping), time since last cultural competency training, time since last communication skills training, and frequency of clinic sessions with Black patients. Multiple linear regressions modeled associations between cultural competency training and different types of bias, adjusting for communication skills training, frequency of encounters with Black patients, and counselor race (White vs. non‐White). Two hundred fifteen participants (107 genetic counselors and 108 trainees) responded, and 205 reported whether they had prior cultural competency training. Of these, 187 (91%) reported ever having cultural competency training, most (53%) of participants who had training had it within 6 months prior to survey completion. We found no clear pattern of associations between cultural competency training and racial biases (implicit or explicit) in adjusted analyses. Participants who had cultural competency training four or more years prior demonstrated less negative implicit stereotyping toward Black individuals compared with those having more recent training; but no statistically significant effect was found for participants who reported never having cultural competency training, compared with those having training more recently than 4 years prior. Overall, our findings do not support that cultural competency training is negatively associated with, or mitigates, Black/White racial prejudices and stereotypes against Black patients. These findings suggest more effective interventions are needed to reduce racial biases. [ABSTRACT FROM AUTHOR]

Although individuals recognize the importance of knowing their family's health history for their own health, relatively few people (e.g., less than a third in one national survey) collect this type of information. This study examines the rates of family communication about family health history of cancer, and predictors of communication in a sample of English-speaking Latino young adults. A total of 224 Latino young adults completed a survey that included measures on family communication, cultural factors, religious commitment, and cancer worry. We found that few Latino young adults reported collecting information from their families for the purposes of creating a family health history (18%) or sharing information about hereditary cancer risk with family members (16%). In contrast, slightly more than half of the participants reported generally "talking with their mothers about their family's health history of cancer." Logistic regression results indicated that cancer worry (odds ratio [OR] = 2.31; 95% confidence interval [CI] = 1.08-4.93), being female (OR = 3.12; 95% CI = 1.02-8.08), and being older (OR = 1.33; 95% CI = 1.01-1.76) were associated with increased rates of collecting information from family members. In contrast, orientation to the Latino culture (OR = 2.81; 95% CI = 1.33-5.94) and religious commitment (OR = 1.54; 95% CI = 1.02-2.32) were associated with increased rates of giving cancer information. Results highlight the need for prevention programs to help further general discussions about a family's history of cancer to more specific information related to family health history.

Research has shown that patient experiences and outcomes of genetic counseling are not equitable across racial categories, disadvantaging Black patients relative to White patients. One major factor contributing to such racial disparities might be genetic counselor racial bias. The present study examined the prevalence of and variation in racial bias toward Black (vs. White) Americans among genetic counselors in North America. This study extends the current literature of racial disparities in experiences and outcomes of genetic counseling by distinguishing prejudice (negative feelings or attitudes) and stereotyping (beliefs) at the implicit and explicit levels as well as by including both certified genetic counselors and genetic counseling trainees. Two‐hundred and fifteen genetic counselors (107 genetic counselors Board‐certified by the American Board of Genetic Counseling, 108 genetic counseling trainees from Accreditation Council for Genetic Counseling accredited programs) completed four measures in a random order: the Race Implicit Association Test (IAT, for implicit prejudice), feeling thermometer (for explicit prejudice), the Medical Cooperativeness IAT (for implicit stereotyping), and a self‐report measure of explicit stereotypes (for explicit stereotyping). On average, genetic counselors (both certified genetic counselors and genetic counseling trainees) were slightly to moderately in favor of White Americans over Black Americans at the implicit level. They were also slightly more likely to associate "medically cooperative" stereotypes with White Americans more than Black Americans implicitly. In contrast, genetic counselors, on average, did not display either explicit prejudice or explicit negative stereotyping, which may reflect social desirability concerns among genetic counselors. However, genetic counselors as a group strongly endorsed stereotypes related to mistrust (mistrustful of the healthcare system, skeptical of genetic testing, mistrustful of genetic counselors) to be more true for Black (vs. White) Americans. Finally, our study revealed relatively large variability in each type of bias across genetic counselors. Future research should examine how such variability in each type of bias is associated with patient experiences and outcomes of genetic counseling. [ABSTRACT FROM AUTHOR]

Pathogenic/likely pathogenic variants (PLPV) in CDH1 are associated with a significantly increased lifetime risk for diffuse gastric cancer, with an average age of onset of 47 years. CDH1 PLPV carriers are recommended to have prophylactic total gastrectomy (PTG) or routine endoscopy surveillance. Emerging adults (EAs) may have unique circumstances that affect their medical management decision‐making about PTG versus endoscopy. The study aim was to use qualitative interpretative phenomenological analysis method to understand the lived experience and medical management decision‐making process for EAs carrying a CDH1 PLPV. Eligible participants were unaffected CDH1 PLPV carriers, ages 18 to 29, who had not undergone PTG and had discussed CDH1 medical management with a health provider. Semi‐structured telephone interviews were transcribed verbatim and analyzed for major themes. Results show EAs wanted to avoid developing diffuse gastric cancer, but most do not feel they are ready for PTG. They had worries about PTG related to their identity exploration, financial stability, and careers. Most did not want to pass the PLPV to their children; however, the cost of preimplantation genetic testing with in vitro fertilization was a concern. Family medical history and self‐understanding of endoscopy and PTG highly influenced medical management decision‐making. Understanding of diffuse gastric cancer detection rate using endoscopy was inconsistent among participants. Body image was not a concern for most, but they worry about dietary restrictions after PTG. Lastly, connection to peers having the same experience was important. These findings increase our understanding of the medical management decision‐making challenges for EA CDH1 carriers. EAs may take an extended time to decide what option is right for them. Thus, genetic counseling for CDH1 PLPV EA carriers requires long‐term support and education. [ABSTRACT FROM AUTHOR]

To help advance research critical to the achievement of the National Society of Genetic Counselors' (NSGC) strategic objectives, coordination and prioritization of society resources are needed. NSGC convened a task force to advance research necessary for the achievement of our strategic objectives by reviewing existing society‐supported research efforts identifying gaps in current research, and coordinating society resources, the task force was formed in order to coordinate and prioritize society resources to advance research critical to the achievement of our strategic objectives. The task force developed a research agenda outlining high‐priority research questions for the next 5 years. The questions are organized into four domains: (a) Genetic Counseling Clients; (b) Genetic Counseling Process and Outcomes; (c) Value of Genetic Counseling Services; and (d) Access to Genetic Counseling Services. This framework can be used to advocate for research and funding priorities within NSGC and with other key research entities to stimulate the growth and advancement of the genetic counseling profession. [ABSTRACT FROM AUTHOR]

Objectives: Universal screening of upper tract urothelial carcinoma (UTUC) for Lynch syndrome by mismatch repair (MMR) protein immunohistochemistry (IHC) has been recommended by some investigators. Herein, we assess this recommendation retrospectively by simulating its performance on a retrospective, unselected cohort of UTUCs, with comparison to the established setting of colorectal and endometrial adenocarcinoma.Methods: We assessed for complete loss of MMR protein (MLH1, MSH2, MSH6, and PMS2) IHC in 74 consecutive cases of UTUC and then tabulated clinical and pathologic factors. MMR findings from same-institution colorectal and endometrial adenocarcinomas were tabulated for comparison.Results: We observed loss of at least one MMR protein in 12% in our UTUC cohort (three MSH2/MSH6, three MSH6 only, one MLH1/PMS2, and two PMS2 only). Of these nine cases (seven males, two females, median age 67 years, five associated with colorectal adenocarcinoma), at least three (4% of the overall cohort) proved to be Lynch syndrome. Overall, MMR loss in UTUC was comparable to colorectal (11%; 50 of 471 cases) and endometrial (12%; 12 of 101 cases) adenocarcinomas.Conclusions: The rate of MMR loss observed in UTUC was comparable to that in the established setting of colorectal and endometrial adenocarcinomas, supporting universal UTUC screening at our institution and others. [ABSTRACT FROM AUTHOR]

Purpose: Genetic counseling (GC) provides critical risk prediction information to women at-risk of carrying a genetic alternation; yet racial/ethnic and socioeconomic disparities persist with regard to GC uptake. This study examined patterns of GC uptake after a referral in a racially diverse population. Materials and Methods: In an urban academic medical center, medical records were reviewed between January 2016 and December 2017 for women who were referred to a genetic counselor for hereditary breast and ovarian cancer. Study outcomes were making an appointment (yes/no) and keeping an appointment. We assessed sociodemographic factors and clinical factors. Associations between factors and the outcomes were analyzed using chi square, and logistic regression was used for multivariable analysis. Results: A total of 510 women were referred to GC and most made appointments. More than half were white (55.3%) and employed (53.1%). No significant associations were observed between sociodemographic factors and making an appointment. A total of 425 women made an appointment and 268 kept their appointment. Insurance status ( p = 0.003), marital status ( p = 0.000), and work status ( p = 0.039) were associated with receiving GC. In the logistic model, being married (odds ratio [OR] 2.119 [95% confidence interval, CI 1.341–3.347] p = 0.001) and having insurance (OR 2.203 [95% CI 1.208–4.016] p = 0.021) increased the likelihood of receiving counseling. Conclusions: Racial disparities in GC uptake were not observed in this sample. Unmarried women may need additional support to obtain GC. Financial assistance or other options need to be discussed during navigation as a way to lessen the disparity between women with insurance and those without. [ABSTRACT FROM AUTHOR]

In hereditary cancer, multigene panel testing is currently replacing older single‐gene approaches. Patients whose tests were previously uninformative could benefit from updated testing. Research suggests that patients desire to be recontacted about updated genetic testing, but few studies have tested the efficacy of recontact efforts. This study investigated the outcomes of a recontact effort in a hereditary cancer clinic and explored the impact of four different recontact letters, randomized in a 2X2 factorial design. Patients who had negative genetic testing for single genes or conditions were mailed letters inviting them to schedule an appointment to discuss updated testing. Patients were randomized to receive one of four letters and each letter emphasized different implications of updated multigene genetic testing: (a) personal medical management implications, (b) implications for family members, (c) both personal and family implications or (d) a control letter. The proportion of patients who arrived for appointments was assessed approximately 7 months after mailing along with associations with patient demographics and type of letter received. Letters were mailed to 586 patients who had initial testing between 2001 and 2015. Most patients were white (78%) and female (97%) with private insurance (65%). At 7 months, 25 patients (4.3%, 95% CI: 2.6% to 5.9%) had arrived for an appointment. Older age was significantly associated with response rate (p = .01), while type of recontact letter was not (p = .54). This study suggests that recontacting patients about updated genetic testing by mail does not yield a large response. It also suggests that personal and/or familial implications do not seem to be significant factors that determine response rate. Nevertheless, results provide meaningful information for cancer clinics about the outcomes of recontact efforts via informational letter. [ABSTRACT FROM AUTHOR]

Background: Hereditary cancer assessment and communication about family history risks can be critical for surviving relatives. Palliative care (PC) is often the last set of providers before death. Methods: We replicated a prior study of the prevalence of hereditary cancer risk among patients with cancer receiving PC consultations, assessed the history in the electronic medical record (EMR), and explored patients’ attitudes toward discussions about family history. This study was conducted at an academic urban hospital between June 2016 and March 2017. Results: The average age of the 75 adult patients with cancer was 60 years, 49 (55%) male and 49 (65%) white. A total of 19 (25%) patients had no clear documentation of family history in the EMR, sometimes because no family history was included in the admission template or an automatically imported template lacked content. In all, 24 (32%) patients had high-risk pedigrees that merited referral to genetic services. And, 48 (64%) patients thought that PC was an appropriate venue to discuss the implications of family history. The mean comfort level in addressing these questions was high. Conclusions: At an academic center, 25% of patients had no family history documented in the EMR. And, 32% of pedigrees warranted referral to genetic services, which was rarely documented. There is substantial room for quality improvement for oncologists and PC specialists—often the last set of providers—to address family cancer risk before death and to increase use and ease of documenting family history in the EMR. Addressing cancer family history could enhance prevention, especially among high-risk families. [ABSTRACT FROM AUTHOR]

Family health history about cancer is an important prevention and health promotion tool. Yet few studies have identified family context factors that promote such discussions. We explored relations among family context (cohesion, flexibility, and openness), self-efficacy, and cancer communication (gathering family history, sharing cancer risk information, and frequency) in a diverse group of women enrolled in a randomized control trial. Baseline survey data for 472 women were analyzed. The women's average age was 34 years, 59% identified as Black, 31% had graduated high school, and 75% reported a family history of any cancer. Results showed that greater family cohesion and flexibility were related to higher communication frequency and sharing cancer information. Women who reported greater self-efficacy were more likely to have gathered family history, shared cancer risk information, and communicated more frequently with relatives. Openness was not associated with communication but was related to greater family cohesion and flexibility. Adjusting for demographic variables, self-efficacy, and family cohesion significantly predicted communication frequency. Women with higher self-efficacy were also more likely to have gathered family health history about cancer and shared cancer risk information. Future research may benefit from considering family organization and self-efficacy when developing psychosocial theories that in turn inform cancer prevention interventions. [ABSTRACT FROM AUTHOR]

Objectives: To determine if intervention school students who received skills-based breast self-exam (BSE)/testicular self-exam (TSE) training were more likely than control school students to report higher intentions to perform BSE/TSE, greater BSE/TSE self-efficacy, and actual performance of BSE/TSE. Methods: BSE/TSE behaviors, intentions, and self-efficacy were assessed in a high schoolbased trial (N = 6 schools; 3 schools randomized/condition) using self-reported data at 3 time points (N = 1058, 9th grade students). Results: At follow-up, intervention students had greater BSE/TSE intentions and self-efficacy than control students. Intervention students were more likely than control students to report monthly BSE (54.8% vs 27.2%, p = .031) and TSE (81.5% vs 31.4%, p = .010). Conclusions: Skills-based interventions with goal setting affect teenagers' self-examination behaviors, intentions, and self-efficacy. Teaching self-screening may empower teenagers to become more engaged in their preventive health, which may lead to improved health as they age. [ABSTRACT FROM AUTHOR]

Women hold diverse beliefs about cancer etiology, potentially affecting their use of cancer preventive behaviors. Research has primarily focused on cancer causal attributions survivors and participants from non-diverse backgrounds hold. Less is known about attributions held by women with and without a family history of cancer from a diverse community sample. Participants reported factors they believed cause cancer. Open-ended responses were coded and relations between the top causal attributions and key factors were explored. Findings suggest certain socio-cultural factors play a role in the causal attributions women make about cancer, which can, in turn, inform cancer awareness and prevention messages. [ABSTRACT FROM PUBLISHER]

Background: Knowing family history is important for understanding cancer risk, yet communication within families is suboptimal. Providing strategies to enhance communication may be useful. Methods: Four hundred ninety women were recruited from urban, safety-net, hospital-based primary care women's health clinics. Participants were randomized to receive the KinFact intervention or the control handout on lowering risks for breast/colon cancer and screening recommendations. Cancer family history was reviewed with all participants. The 20-minute KinFact intervention, based in communication and behavior theory, included reviewing individualized breast/colon cancer risks and an interactive presentation about cancer and communication. Study outcomes included whether participants reported collecting family history, shared cancer risk information with relatives, and the frequency of communication with relatives. Data were collected at baseline, 1, 6, and 14 months. Results: Overall, intervention participants were significantly more likely to gather family cancer information at follow-up (odds ratio [OR]: 2.73; 95% confidence interval [CI]: 2.01, 3.71) and to share familial cancer information with relatives (OR: 1.85; 95% CI: 1.37, 2.48). Communication frequency (1=not at all; 4=a lot) was significantly increased at follow-up (1.67 vs. 1.54). Differences were not modified by age, race, education, or family history. However, effects were modified by pregnancy status and genetic literacy. Intervention effects for information gathering and frequency were observed for nonpregnant women but not for pregnant women. Additionally, intervention effects were observed for information gathering in women with high genetic literacy, but not in women with low genetic literacy. Conclusions: The KinFact intervention successfully promoted family communication about cancer risk. Educating women to enhance their communication skills surrounding family history may allow them to partner more effectively with their families and ultimately their providers in discussing risks and prevention. [ABSTRACT FROM AUTHOR]

Identifying women appropriate for cancer genetic counseling referral depends on patient-reported family history. Understanding predictors of reporting a high-risk family is critical in ensuring compliance with current referral guidelines. Our objectives were to (1) assess prevalence of candidates for BRCA1 and BRCA2 counseling referral in a primary care setting, (2) explore associations with high-risk status and various patient (e.g., race) and family structure (e.g., number of relatives) characteristics, and (3) determine whether high-risk patients had genetic counseling and/or testing. Survey and pedigree data were collected between 2010 and 2012 for 486 Women's Health Clinic patients. Analyses in 2013 investigated perceived cancer risk and worry, family structure, and receipt of genetic counseling. We explored whether these were associated with meeting USPSTF guidelines for genetic counseling referral. Twenty-two (4.5 %) women met the criteria for BRCA referral. Only one of these women had previous genetic counseling, and one reported prior genetic testing. Older women were more likely to meet BRCA referral criteria ( P < 0.001). Although perceived risk was higher among high-risk women, 27 % of high-risk women felt their breast cancer risk was 'low', and 32 % felt their risk was lower than average. About one in 22 women in primary care may require genetics services for hereditary breast and ovarian cancer, but alarmingly, few actually receive these services. Also, a significant proportion do not perceive that they are at increased risk. Educational interventions may be needed for both providers and patients to increase awareness of familial risk and appropriate genetic counseling services. [ABSTRACT FROM AUTHOR]

Background: Studies show that daughters of mothers with breast cancer may be at increased risk for developing the disease. However, daughters' adherence to health behavior and screening recommendations, compared to the general population, is unknown. Methods: Telephone interviews explored characteristics of adult daughters ( n=147), including primary and secondary preventive behaviors, body mass index (BMI, kg/m2), physical activity, fruit/vegetable intake, alcohol intake, smoking, and mammography. Daughters of mothers with breast cancer were recruited from the community and were compared with Virginia women ( n=2528) from the 2005 Behavioral Risk Factor Surveillance System (BRFSS) survey. Differences were examined using logistic regression, adjusting for demographic covariates. Results: Daughters were younger ( p<0.001), more highly educated ( p<0.001), and more likely to never have been married ( p<0.001) than BRFSS participants, but groups were similar by race. In adjusted analyses, daughters were significantly more likely to have ever had a mammogram ( p<0.001) and to have had one recently ( p=0.001). Daughters also were significantly less likely to consume>3 fruit/vegetable servings daily ( p=0.032) compared to BRFSS results. There were no differences in BMI, smoking rates, alcohol consumption, or level of physical activity at work. Conclusions: Daughters with familial breast cancer risk were more likely to receive mammography screening than BRFSS participants, but they were no different in BMI, physical activity at work, exercise, or smoking than BRFSS participants and were less likely to consume more fruits and vegetables. More research is needed to explore group differences in screening practices compared to modifiable health behaviors in daughters of mothers with breast cancer. [ABSTRACT FROM AUTHOR]

Purpose: The availability of genetic tests for cancer susceptibility is increasing. Current tests, however, have limited clinical sensitivity. Even when clinically valid tests are available, the genetic counseling and informed consent process might not be feasible for dying patients with cancer. DNA banking preserves the opportunity for future research or clinical testing and may provide critical opportunities for surviving relatives. This study explored the current practices and potential for DNA banking for cancer susceptibility among oncologists specializing in palliative care. Methods: Palliative care oncologists actively providing clinical care for dying patients with cancer were recruited for an online survey. Descriptive statistics for DNA banking practices, perceived qualification to recommend banking, and potential predictors were assessed. Results: Data were collected from 49 physicians (37% recruitment rate). Eighty percent reported assessing at least some patients for genetic cancer susceptibility in the past 12 months. No participants reported banking DNA for patients in the past 12 months. Only 5% reported feeling at least somewhat qualified to order DNA banking. A Web-based risk assessment tool and genetic counselor on staff were perceived as the most helpful potential resources. Conclusion: Despite its potential, DNA banking is not being used by palliative care oncologists. [ABSTRACT FROM AUTHOR]

Hereditary cancer assessment at the end of life is a relatively unexplored area, but it could be critical for surviving family members. This study explored the prevalence of hereditary cancer among dying cancer patients and assessed patients' perceived awareness of DNA testing and/or banking in a public access hospital. Palliative care patients with cancer from a single institution (or their medical-decision-making surrogates for patients unable to answer for themselves) completed structured interviews. Information was collected through medical records review and structured interviews for 43 dying cancer patients. Information for 9 patients was collected from surrogates. Nine patients (21%, 95% CI = 8.8% to 33.1%) had strong genetic risk. Currently available genetic tests could have addressed this risk for several patients. None had previous genetic counseling, testing or DNA banking. Among strong-risk patients, about half of patients/surrogates had heard/read 'almost nothing' about genetic testing (44%) and DNA banking (67%). Perceived genetic awareness was not associated with genetic risk, and neither were sociodemographic characteristics. The proportion of hereditary cancer may be at least as high in the palliative care population as in other clinical settings, but awareness and uptake among patients are low. These conditions are not being recognized upstream and families are losing valuable information. [ABSTRACT FROM AUTHOR]

Online communication among patients and consumers through support groups, discussion boards, and knowledge resources is becoming more common. In this article, the summary of a workgroup discussion, we discuss key methods through which such web-based peer-to-peer communication may affect health promotion and disease prevention behavior (exchanges of information, emotional and instrumental support, and establishment of group norms and models). We also discuss several theoretical models for studying online peer communication, including social theory, health communication models, and health behavior models. Although online peer communication about health and disease is very common, research evaluating effects on health behaviors, mediators, and outcomes is still relatively sparse. We suggest that future research in this field should include formative evaluation and studies of effects on mediators of behavior change, behaviors, and outcomes. It also will be important to examine spontaneously emerging peer communication efforts to see how they can be integrated with theory-based efforts initiated by researchers. [ABSTRACT FROM AUTHOR]

Aims: A randomized trial investigated the impact of risk-tailored messages on mammography in diverse women in the Virginia Commonwealth University Health System's gynecology clinics. Methods: From 2003 to 2005, 899 patients ≥40 years of age were randomized to receive risk-tailored information or general information about breast health. Multiple logistic regression analyses summarize their breast health practices at 18 months. Results: At baseline, 576 (64%) women reported having a mammogram in the past year. At 18-month follow-up, mammography rates were 72.6% in the intervention group and 74.2% in the control group (N.S.). Women ( n = 123) who reported worrying about breast cancer “often” or “all the time” had significantly higher mammography rates with the intervention (85.0%) vs. the controls (63.5%). No significant differences existed in clinical breast examination, self-examination, or mammography intentions between the two study arms. However, intervention women with lower education reported significantly fewer clinical breast examinations at follow-up. Conclusions: The brief intervention with a risk-tailored message did not have a significant effect overall on screening at 18 months. However, among those who worried, mammography rates in the intervention group were higher. Individual characteristics, such as worry about breast cancer and education status, may impact interventions to improve breast cancer prevention practices. [ABSTRACT FROM AUTHOR]

Background: Approximately 510 of all cancers and cardiovascular diseases have a significant genetic component. Of the 15 most frequent admission diagnoses for palliative care, at least one third have a significant genetic component which is testable, informative, and potentially life saving to the survivors. Once the patient has died, the chance to test or bank DNA for common inherited conditions such as breast cancer, colon cancer, cardiovascular disease, etc., is gone. Objective: To determine the frequency of genetic conditions for commonly seen palliative care conditions, the availability of testing or DNA banking for future testing, and how genetics assessment is helpful. Design: A case illustration and review of the currently published evidence. Results: Genetic testing fits the accepted model of family-centered palliative care, is ethical, and may lead to life-saving interventions. Risk assessment tools and helpful websites are available. Conclusions: While common genetic conditions should be recognized before end-of-life care, the palliative care health professional may be the only person to recognize the condition before death of the patient and loss of available DNA. [ABSTRACT FROM AUTHOR]

Genetic breast cancer susceptibility testing presents ethical challenges for healthcare providers and their patients. The familial aspects of genetic information, recognition of DNA as a shared history and present common thread for all people and widespread misunderstandings of genetic tests all contribute to these challenges. In this article an ethical framework internationally developed as a charter for medical professionalism is used to guide approaches to ethical dilemmas of breast cancer genetic testing. Specifically, three ethical principles are explored as they relate to testing: primacy of patient, patient autonomy, and social justice. Approaching breast cancer genetic testing from this framework could help to ensure thoughtful and ethical practices in this rapidly evolving field. [ABSTRACT FROM AUTHOR]

Background: Reported family medical history may be the most widely accessible genomics screen currently available. The worth of any population-screening tool may be measured by parameters such as sensitivity and specificity. There is some evidence and theory suggesting that family history of breast cancer may be more frequently communicated about maternal (versus paternal) lines. If true, a discrepancy in reporting family history of breast cancer could mean suboptimal accuracy for this genomics-screening tool. Methods: A cross-sectional analysis of reported family history of breast cancer was conducted beginning in early fall 2005 of data collected from April 2003 to March 2005. Study participants were Women’s Health Clinic patients without breast cancer aged at least 40 years. The number of women reporting extended paternal relatives (e.g., aunts, grandmothers) with breast cancer was compared to the number of women reporting maternal relatives. Results: More women reported a maternal relative with breast cancer (16%) compared to those reporting paternal relatives (10%) (McNemar odds ratio=1.71, 95% confidence interval=1.26 to 2.34). A discrepancy remained in analyses adjusting for potential covariates (race/ethnicity, awareness of breast cancer, family communication about breast cancer, and perceived risk). Conclusions: Self-reported family history of breast cancer may not optimally capture inherited risk from the father’s side of the family. Further research is needed to look for modifiable contributors to this discrepancy to optimize screening for familial breast cancer. [Copyright &y& Elsevier]

The article focuses on genetic screening which identifies known markers of disease of the surviving family members of a dying patient. It mentions the recommendations of genetic banking or testing for genetic disorders including primary cancers, major birth defects, and sexual development disorders. It says that genetic nurses and medical geneticists can facilitate in genetic evaluations such as assistance in test selection and provide informed consent.

The authors comment on the article of Mark Kuczewski that concern the appropriateness of spirituality in the clinical setting, which is published within the issue. They counter the suggestion of Kuczewski with regards to the development of a model in which health care providers insert their own values, spirituality, worldviews or other experiences into certain discussions surrounding medical decision making, and offers some alternative approach.