Realities and Myths of Safety Issues for Community Researchers Working in a Marginalized African American Community

Community psychologists often conduct research in collaboration with marginalized communities in which safety is an issue. However, we rarely talk about what specific safety issues we experience and how we deal with them. Our story describes the realities and myths of neighborhood safety that were experienced in a low-income African American neighborhood of Chicago, while collaborating on a project designed to increase access to the Internet to obtain health information. We examine both the challenges experienced and our responses in the context of a community intervention planned, implemented, and evaluated by a partnership team composed of various stakeholders. Critical lessons such as the importance of building on community strengths and the need to be aware of our own biases are discussed.     

Risk Reduction Behaviors and Provider Communication Following Genetic Counseling and BRCA1 Mutation Testing in an African American Kindred

Little is known about the impact of cancer genetic counseling and testing on health behaviors in racial and ethnic subgroups. This prospective observational study examined use of risk reduction strategies following BRCA1 counseling and testing. Participants were female members of an African American kindred who received genetic education, counseling and testing (n = 40) and completed a 1-year follow-up interview. Mutation carriers were more likely to opt for breast (100%, 7/7) and ovarian (25%; 1 of 4) cancer surveillance than prophylactic surgery. Following genetic counseling, 71% (5/7) of the BRCA1 carriers who opted for surveillance reported having a mammogram within the year following receipt of their genetic test results. Ovarian cancer screening among mutation carriers increased from 0% at baseline to 25% (one of four) at 1 year. Compared to noncarriers (23%, 7/30), carriers (70%, 7/10) were more likely to discuss their BRCA1 test results with their primary health care providers. Surveillance for breast cancer was preferred to prophylactic surgery and chemoprevention as a way to reduce risk for these cancers. Our data indicate that patient-provider communication about BRCA1 test results is suboptimal.     

Critical Race Theory as a Decisional Framework for the Ethical Counseling of African American Clients

The authors introduce critical race theory as a decisional framework for ethical counseling, with a focus on racial disparities when working particularly with African American clients. The authors provide a fictional case example that explains how this framework can be implemented when conducting cross‐cultural counseling with African American clients. Implications for counselors are provided.     

Effects of Counseling and Ethnic Identity on Perceived Risk and Cancer Worry in African American Women

Improving breast screening behaviors in African American women is an important public health goal. To increase participation in screening, it is necessary to identify factors that contribute to reduced screening, including perceived risk and cancer worry. This paper presents predictors of changes perceived in risk and worry among African American women of differing ethnic identities as they undergo breast cancer risk counseling. Participants (n = 113) were recruited from community sources to a study of counseling for breast cancer risk. They completed a baseline assessment, randomly received breast cancer risk counseling or served as a control group, and completed a follow-up assessment. Counseling produced significant differences in perceived risk and cancer worry. Predictors of risk and worry changes, as a result of counseling, included income and ethnic identity. These data can guide better services for African American women and research into the complexity of the effects of ethnic identity on health.     

Making the Connections: Community Capacity for Tobacco Control in an Urban African American Community

Developing community capacity to improve health is a cornerstone of community-based public health. The concept of community capacity reflects numerous facets and dimensions of community life and can have different meanings in different contexts. This paper explores how members of one community identify and interpret key aspects of their community’s capacity to limit the availability and use of tobacco products. Particular attention is given to examining the interrelationship between various dimensions of community capacity in order to better understand the processes by which communities are able to mobilize for social change. The study is based on qualitative analysis of 19 in-depth interviews with key informants representing a variety of community sectors in Harlem, New York City. Findings indicate that the community is viewed as rich in human and social resources. A strong sense of community identity and connectedness underlies this reserve and serves as a catalyst for action. At the time this study was conducted, all authors were at Columbia University Mailman School of Public Health.     

Bayesian Risk Assessment in Genetic Testing for Autosomal Dominant Disorders with Age-Dependent Penetrance

Risk assessment is an essential component of genetic counseling and testing, and the accuracy of risk assessment is critical for decision making by consultands. However, it has been shown that genetic risk calculations may have high error rates in practice. Risk calculations for autosomal dominant disorders are frequently complicated by age-dependent penetrance and sensitivities of less than 100% in genetic testing. We provide methods of risk calculation for prototypical pedigrees of a family at risk for an autosomal dominant disorder with age-dependent penetrance. Our risk calculations include scenarios in which the sensitivity of genetic testing is less than 100%, and in which the sensitivity of genetic testing varies for different family members at risk. Our Bayesian methods permit autosomal dominant disease probabilities to be calculated accurately, taking into account all relevant information. Our methods are particularly useful for hereditary cancer syndromes, in which genetic testing can seldom achieve 100% sensitivity. Our methods can be applied to many different scenarios, including those where the sensitivity of genetic testing varies for different family members at risk. The content of this publication does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. Government.     

Communal Versus Individual Learning of a Math-Estimation Task: African American Children and the Culture of Learning Contexts

The authors compared the performance of 78 African American 5th-grade students who studied a math-estimation task in one of two learning contexts. Learning contexts differed in the degree to which they afforded the expression of communalism. ANCOVA confirmed that posttest performance was best for students who studied in the high communal-learning context. The findings support A. W. Boykin's (1994) contention that the cultural context of learning can be a critical mediator of children's performance.     

Assessment of the Use and Feasibility of Video to Supplement the Genetic Counseling Process: A Cancer Genetic Counseling Perspective

Cancer genetic counselors use a variety of teaching modalities for patient education. This survey of cancer genetic counselors assessed their use of educational videos and their recommendations for content of future videos. Thirty percent of respondents use videos for patient education. Cited benefits included reinforcement of information for clients and increased counselor efficiency. Of the 70% who do not use videos, predominant barriers included the perceived lack of an appropriate video, lack of space and/or equipment, and concern that videos are impersonal. Most respondents desired a video that is representative of the genetic counseling session, but emphasized the importance of using broad information. Content considered critical included the pros and cons of genetic testing, associated psychosocial implications, and genetic discrimination. The results of this exploratory study provide data relevant for the development of a cancer genetics video for patient education, and suggestions are made based on aspects of information processing and communication theories.     

Risk Assessment and Genetic Counseling for Hereditary Breast and Ovarian Cancer: Recommendations of the National Society of Genetic Counselors

These cancer genetic counseling recommendations describe the medical, psychosocial and ethical implications of identifying at-risk individuals for hereditary breast and ovarian cancer (HBOC) through cancer risk assessment, with or without genetic susceptibility testing. They were developed by members of the Practice Issues Subcommittee of the National Society of Genetic Counselors’ Familial Cancer Risk Counseling Special Interest Group. The information contained in this document is derived from extensive review of the current literature on cancer genetic risk assessment as well as the professional expertise of genetic counselors with significant experience in education and counseling regarding hereditary breast and ovarian cancer. Critical components of the process include the ascertainment of medical and family histories, determination and communication of cancer risk, assessment of risk perception, education regarding the genetics of HBOC, discussion of molecular testing for HBOC if appropriate (including benefits, risks and limitations) and any necessary follow-up. These recommendations do not dictate an exclusive course of management or guarantee a specific outcome. Moreover, they do not replace the professional judgment of a health care provider based on the clinical situation of a client.     

Clinical Characterization and Risk Profile of Individuals Seeking Genetic Counseling for Hereditary Breast Cancer in Brazil

Hereditary breast cancer (HBC) accounts for 5–10% of breast cancer cases and it significantly increases the lifetime risk of cancer. Our objective was to evaluate the sociodemographic variables, family history of cancer, breast cancer (BC) screening practices and the risk profile of cancer affected or asymptomatic at-risk women that undergo genetic counseling for hereditary breast cancer in public Brazilian cancer genetics services. Estimated lifetime risk of BC was calculated for asymptomatic women using the Gail and Claus models. The majority of women showed a moderate lifetime risk of developing BC, with an average risk of 19.7% and 19.9% by the Gail and Claus models, respectively. The average prior probability of carrying a BRCA1/2 gene mutation was 16.7% and overall only 32% fulfilled criteria for a hereditary breast cancer syndrome as assessed by family history. We conclude that a significant number of individuals at high-risk for HBC syndromes may not have access to the benefits of cancer genetic counseling in these centers. Contributing factors may include insufficient training of healthcare professionals, disinformation of cancer patients; difficult access to genetic testing and/or resistance in seeking such services. The identification and understanding of these barriers is essential to develop specific strategies to effectively achieve cancer risk reduction in this and other countries were clinical cancer genetics is not yet fully established.     

Knowledge and Expectations of Women Undergoing Cancer Genetic Risk Assessment: A Qualitative Analysis of Free-Text Questionnaire Comments

Individuals undergoing cancer genetic risk assessment have been found to have a poor understanding of the process, which may affect how well they cope with learning their risk. This paper reports free-text data from questionnaires completed by women undergoing a randomised controlled trial of a psychological intervention. Of the 268 women undergoing genetic assessment for familial breast/ovarian cancer risk who were invited to take part in the trial, 157 women returned research questionnaires. Of these, 97 women provided free-text comments upon referral to a cancer genetics clinic, 62 provided comments whilst waiting for risk information (average, moderate or high), and 36 women provided comments following notification of risk. This paper reports a thematic analysis of the free-text data. Themes reflected individuals’ poor knowledge and uncertainty about genetic risk assessment. How well individuals responded to learning their risk depended upon whether expectations had been met. Regardless of risk, individuals undergoing cancer genetic risk assessment are likely to benefit from increased information about its process and timescales, and access to increased psychological support. Free-text comments can provide valuable data about individuals’ expectations and knowledge of genetics services.     

Reinventing the Self in the Face of Received Transgenerational Hatred in the African American Community

There are many clinical methods for understanding and transforming the impact of historical trauma, and reinventing the self in the clinical process. However, the approach advocated here requires that regardless of what clinical method of intervention is chosen, a particular strand must run through the process of treatment to produce durable and meaningful change. This strand must run through psychoanalysis, creative and expressive arts therapies, as well as many forms of intervention in aggrieved communities. The strand includes understanding human suffering, the way that particular suffering is mentalized by the victimized group and subsequently reenacted by generations to come. In technical terms there must first be many profiles of understanding of the historical injury. Then there must be an understanding of how the aggrieved community has stored in their communal memory those psychological hurts—those feelings of humiliation and changing historical accounts of the actual injuries. Subsequently those sendimentations of historical grievances are enacted within the transference in the clinical situation where the grievances are not only staged, but re-staged, distorted or extended. Then comes the most decisive obligation the clinician has towards the analysand, patient, client or community that is attempting to transform itself. That decisive obligation is to extract the errand or ambush towards extinction and to undergo the unpleasant drudgery of constantly engaging the mandate to die or destroy oneself in order to find new and more flexible forms of adaptation.     

A Prospective Comparison Study of Different Methods of Gathering Self-Reported Family History Information for Breast Cancer Risk Assessment

Currently there is much debate regarding the ability of mathematical models incorporating epidemiological information or mutation-based risk algorithms to accurately predict a woman's risk of developing breast cancer. Without access to accurate family history information these models have limited use. This study compares different methods of gathering family history information and the impact on subsequent risk assessment. These methods were compared to the gold standard interview with a trained genetics' professional. The amount and accuracy of information provided by primary care doctors' letters was found to be poor and better information was obtained by sending a postal questionnaire directly to the patient. Because of the high number of low-risk women referred to clinic a questionnaire (the FCAT) was designed to provide reassurance and piloted as part of this study. This paper highlights the importance of using appropriate methods to gather the family history information. It presents evidence for the importance of a skilled assessor and the need to allow time for women to discuss the importance of this information with their family.     

Factors Influencing Uptake of Genetic Testing For Colorectal Cancer Risk in an Australian Jewish Population

There is a significant excess of colorectal cancer in the Australian Ashkenazi Jewish community. This excess can partially be attributed to inherited factors that are over represented in this population, such as the APC variant I1307K, which is associated with a modest increase in colorectal cancer risk. There is currently only sporadic clinical genetic testing offered for this variant, as neither the exact increase in cancer risk and therefore the appropriate screening strategies for I1307K carriers, nor the acceptability of such testing in Jewish communities have been determined. This study reports a high acceptability of such genetic testing within a community sample of 300 Australian Jewish individuals—94% of participants would have a test for predisposition to colorectal cancer and a majority would make this decision based on the desire for information for their families and to decrease their own cancer risk. Some concerns were noted about genetic testing for cancer predisposition, including insurance discrimination, test accuracy and confidentiality.     

Incorporating a Psychological Counselor in a Cancer Risk Assessment Program: Necessity, Acceptability, and Potential Roles

Evidence suggests that cancer risk assessment may be associated with increased psychological distress. This exploratory study assessed the necessity and acceptability of incorporating psychological counseling into routine clinic procedures at a cancer risk program. Following a visit to a university-based cancer risk clinic, patients (N = 102) completed an anonymous self-report instrument. Participants reported experiencing current stress and anxiety (41%), depression (29%), and suicidal ideation (2%). Patients with a history of cancer were more likely to be experiencing current emotional difficulties. Sixty-nine percent of the participants found the visit with the psychological counselor to be helpful, while 41% of the participants reported interest in follow-up psychological services. Interest in receiving future psychological services was positively correlated with levels of anxiety, depression, and cancer worry. This pilot study demonstrates the acceptability and potential role for psychological counselors in increasing adjustment in high-risk patients undergoing genetic counseling for inherited cancers.     

Cancer Risk Assessment and Genetic Counseling in an Academic Medical Center: Consultands' Satisfaction, Knowledge, and Behavior in the First Year

In 1995, we formally established a multifaceted cancer genetics program of clinical services, research, and education at a general academic medical center. In the first year, 58 families, mostly physician referred, received cancer risk assessment and genetic counseling for a family and/or medical history of cancer. The primary reasons for seeking consultation were to determine their risk or their offspring's risk for developing certain cancers and to inquire about the availability of DNA testing for predisposition to breast, ovarian, or colon cancers. To assess the level of satisfaction with program services, 51 consultands (22% with a personal history of cancer) were interviewed independently by telephone 3–12 months after the session. One goal of the survey was to improve program service. Ninety percent of respondents reported that the consultation was worth their time and money. Forty-two percent stated that their anxiety related to their cancer risk had decreased following counseling and 56% indicated no change. Recall of exact numerical risk was poor and one-third could not remember hearing any risk estimate. More respondents would recommend the service to friends (90%) than to family members (75%). Overall, the service was positively received by the majority of patients.     

The Prophylactic Mastectomy Dilemma: A Support Group for Women at High Genetic Risk for Breast Cancer

The goal of this pilot study was to test the usefulness of a six session psychoeducational support group for women at high genetic risk for breast cancer who were considering prophylactic mastectomy. The themes of the group sessions included overestimation of and anxiety about risk; desire for hard data; the emotional impact of watching a mother die of breast cancer; concerns about spouse reactions; self- and body image; the decision-making process; and confusion over whom to trust in decision making. Both the participants and the multidisciplinary leaders concluded that as a supplement to individual counseling, a support group is a beneficial and cost-effective treatment modality. Recommendations for the optimal format for such a group are described.     

The Familial Cancer Program of the Vermont Cancer Center: Development of a Cancer Genetics Program in a Rural Area

In response to many scientific discoveries linking cancer in certain families to inherited factors, the Vermont Cancer Center established the Familial Cancer Program (FCP) in December 1993. This multifaceted program combines the expertise of clinicians and researchers in many disciplines, including genetics, oncology, psychology, and molecular biology. The program's goals are identification of families in its region with excess cancer, provision of clinical services to such families, and use of research protocols when available and appropriate. This article describes the experience of setting up a familial cancer program in a rural area and discusses both successes and challenges in such an endeavor.     

Strength-Based Assessment of Rural African American Early Adolescents: Characteristics of Students in High and Low Groups on the Behavioral and Emotional Rating Scale

Early adolescents strengths were examined in relation to factors that are associated with developmental risk or resilience in two rural low-income southern communities. The sample was comprised 279 students (101 boys, 178 girls), all of whom were African American and reflected the public school attendance of this community. Parent reports on the Behavioral and Emotional Rating Scale (BERS) were used to assess strengths. BERS scores were examined in relation to academic, behavioral, and social characteristics of participants. For girls, total strength scores on the BERS were positively associated with indices of high competence and negatively associated with problematic characteristics. For boys, high and low total strength scores differentiated between youth who did and did not have risks associated with externalizing behavior problems. The results are discussed in terms of their implications for assessment and prevention.