Genetic Counselors’ Religiosity & Spirituality: Are Genetic Counselors Different from the General Population?

Although there is evidence that the religious beliefs of genetic counselors (GCs) can induce internal conflict in at least some genetic counseling scenarios, empirical research on the religiosity of GCs is limited. This study compares genetic counselors to a representative sample of the adult U.S. population on multiple religiosity measures. After controlling for several sociodemographic factors the percentage of GCs who report having a religious affiliation is similar to the general U.S., but GCs are less likely to affiliate with conservative Christian religions and are more likely to be Jewish. GCs are significantly less likely than the general U.S. population to: believe in god, attend religious services, pray, and believe in an afterlife even after controlling for relevant sociodemographic factors. Despite the lower levels of religiosity, a majority of GCs do report themselves to be moderately to highly spiritual. We explore potential reasons for religiosity differences as well as possible implications in the context of the GC scope of practice.     

What Information Do Cancer Genetic Counselees Prioritize?

This study explored the informational needs of individuals attending genetic counseling for hereditary cancer, using a free-choice and a forced choice method. Prior to the consultation the informational needs of 334 counselees from Sweden and Norway were assessed by the QUOTE-gene (ca) questionnaire and by a study specific forced choice method, using Q-methodology. Questionnaire responses indicated that counselees' major concerns pertained to the need to be taken seriously, to be provided with sufficient risk estimation and medical/genetic information and to be involved in the decision making process. Furthermore, prior to counseling, counselees noted that the counselors' consideration and skillfulness were also extremely important. Analysis of the Q-sorting results revealed that counselees' needs could be assigned to one of five groups: the "need for facts; caring communication and medical information; information and support in communicating the genetic information to others; practical care and practical/medical information". Particularly noteworthy, counselees with varying backgrounds characteristics prioritized different needs. Cancer genetic counselees probably have different needs due to their medical and demographic background when attending genetic counseling. Addressing counselees' specific concerns more sufficiently and thereby increasing the overall effectiveness of the counseling session requires increased insight into individual needs, by for instance, utilizing screening methods such as QUOTE-gene (ca) prior to the counseling session.     

African American Women’s Limited Knowledge and Experiences with Genetic Counseling for Hereditary Breast Cancer

Genetic counseling and testing for hereditary breast cancer have the potential benefit of early detection and early interventions in African American women. However, African American women have low use of these services compared to White women. We conducted two focus groups with African American women diagnosed with breast cancer (affected group, n?=?13) and women with at least one first-degree relative with breast/ovarian cancer (unaffected group, n?=?8). A content analysis approach was employed to analyze interview data. Breast cancer survivors had more knowledge about genetic counseling and testing than participants who were unaffected with cancer. However, knowledge about genetic counseling was limited in both groups. Barriers to pursuing genetic counseling and testing included poor understanding of the genetic counseling and testing process, fear of carrying the mutation, concerns about discrimination, and cost. Motivators to participate in genetic counseling and testing included desire to help family members, insurance coverage, and potential of benefiting the larger African American community. Education efforts are needed to increase genetic counseling and testing awareness in the African American community.     

An Investigation of Genetic Counselors’ Testing Recommendations: Pedigree Analysis and the Use of Multiplex Breast Cancer Panel Testing

Genetic testing recommendations for hereditary breast and ovarian cancer involve pedigree analysis and consultation of testing guidelines. The testing landscape for hereditary cancer syndromes is shifting as multiplex panel tests become more widely integrated into clinical practice. The purpose of the current study was to assess how genetic counselors utilize pedigrees to make recommendations for genetic testing, to determine consistency of these recommendations with National Comprehensive Cancer Network (NCCN) Guidelines and to explore current use of multiplex panel testing. Sixty-nine genetic counselors were recruited through the National Society of Genetic Counselors Cancer Special Interest Group’s Discussion Forum. Participation involved pedigree analysis and completion of an online questionnaire assessing testing recommendations and use of multiplex panel testing. Pedigree analysis and test recommendations were scored for consistency with NCCN guidelines. The average score was 12.83/15 indicating strong consistency with NCCN guidelines. Participants were more likely to consider multiplex testing when pedigrees demonstrated highly penetrant dominant inheritance but were not indicative of a particular syndrome. Participant concerns about multiplex panel testing include limited guidelines for both testing eligibility and medical management. This study demonstrates high utilization of pedigree analysis and raises new questions about its use in multiplex genetic testing.     

Are Religious Women More Likely to Have Breast Cancer Screening?

The study objective was to investigate whether women who frequently attend religious services are more likely to have breast cancer screening—mammography and clinical breast examinations—than other women. Multivariate logistic regression models show that white women who attended religious services frequently had more than twice the odds of breast cancer screening than white women who attended less frequently (Odds Ratio (OR) = 2.61; 95% Confidence Interval (CI) = 1.12, 6.06). The behavior of white women was different from African American women (religious attendance-race interaction term p-value = 0.008); African American women who attended religious services frequently were possibly less likely to have breast cancer screening (OR 0.49; CI = 0.19–1.31).     

Multiply Victimized Women: How Do They Change?

Recent studies have demonstrated that women are frequently victims of several types of violent actions via different agents throughout their life spans. Furthermore, multiple victimizations have been associated with psychological difficulties. The present study aimed to understand the change processes, in a self-directed way, of 19 female victims of multiple violent actions during their lifetimes. The women were evaluated for one year using a depression scale and a qualitative interview. The interviews were analyzed using the innovative moments (IMs) model. The results evidenced three groups, according to the evolution of their depressive symptoms during the one-year evaluation period. There were two unchanged groups, one being the symptomatic group (N = 6), which continuously presented symptoms at a clinical level, and the other the asymptomatic group (N = 7), which did not report depressive symptoms at any assessment moment. The change group (N = 6) exhibited a reliable decrease in clinically significant symptoms. Regarding IMs, the majority of the women were able to develop innovative moments regarding the dominant problem over a one-year evaluation period. Those women mobilized alternative ways to address multiple victimization experiences primarily through reflection IMs. Although there were several exceptions to the problematic narratives during the one-year assessment, the change group had a higher proportion and diversity of IM types—namely, a higher reconceptualization and reflection subtype II—compared with the unchanged groups. Moreover, reconceptualization differentiated the change group from the other two groups. These latter IMs may reflect the concept of “postvictimization growth” and the positive changes that arise from experiences of victimization.     

How Do African American and Caucasian Women View Themselves at Midlife?1,2

This report examines midlife perceptions of African American and Caucasian women. African American and Caucasian women (aged 42 to 52) completed self‐report measures of midlife perceptions, health status, and personality factors. Women had positive perceptions of themselves at midlife; few women reported interpersonal isolation or hopelessness. More optimistic women reported a more positive perception of their current identity and security at midlife. African American women reported more positive perceptions than did Caucasian women. Among those who reported more stressful life events and financial difficulty, African Americans had more positive perceptions, whereas Caucasians had more negative perceptions. Although women tend to view themselves positively at midlife, race is an important moderator of psychosocial factors that may be associated with midlife perceptions.     

Why Is Cancer Genetic Counseling Underutilized by Women Identified as at Risk for Hereditary Breast Cancer? Patient Perceptions of Barriers Following a Referral Letter

Family history information comprises an important tool in identifying and referring patients at risk for hereditary breast and ovarian cancer (HBOC) to cancer genetic counseling. Despite recommendations and support provided by numerous professional organizations, cancer genetic counseling services are underutilized by atrisk patients. This study aimed to: (1) determine the rate of genetic counseling utilization following a referral letter, (2) characterize factors (barriers and supports) which influenced uptake of services, and (3) identify potential strategies for increasing utilization. This study evaluated the uptake of cancer genetic counseling among 603 screening mammography patients identified as having an increased risk for HBOC based on National Comprehensive Cancer Network (NCCN) guidelines. At risk individuals and their primary care providers were mailed a referral letter recommending genetic counseling. Three focus groups (N = 24) were conducted to identify responses to receiving a letter recommending genetic counseling, barriers to seeking genetic counseling, and facilitating factors to utilizing these services. Participant responses were qualitatively analyzed using thematic and cross case analysis. Within one year, 50/603 (8 %) of the identified at-risk women completed a genetic counseling appointment. Participant-perceived barriers which influenced their decision not to seek genetic counseling included lack of relevance and utility, limited knowledge about genetic counseling, concerns about the genetic counseling process, and concerns about cost and insurance coverage. Participant-perceived facilitating factors which would support a decision to seek genetic counseling included greater awareness and education about genetic counseling services when receiving a referral, and improved follow up and guidance from their provider. Findings from this study support the need for patient and primary care provider education, and improved provider-patient communication to increase uptake of genetic counseling services.     

What Do Genetic Counselors Learn on the Job? A Qualitative Assessment of Professional Development Outcomes

Professional development is an important goal for professionals in human service fields such as counseling, teaching, and nursing. However, there are relatively few published papers on this topic specific to genetic counselors, and no studies systematically examine the outcomes of their professional development. This study was designed to investigate genetic counselors’ perceptions of their post-degree learning and to compare themes in their learning to those of psychotherapist professional development models. Two hundred ninety-three genetic counselors completed the demographics portion of an anonymous online survey, and of these, 185 also responded to at least one of two open-ended items: What is the most important thing you have learned about yourself in your practice as a genetic counselor? and What advice would you give to genetic counseling students just starting their career? An interpretative content-analysis method was used to extract three major themes: Intrapersonal lessons, Interpersonal lessons, and Professional lessons. Training and practice implications and research recommendations are provided.     

Quality of Life and Coping of Women Treated for Breast Cancer and Their Caregiver. What are the Interactions?

This longitudinal study analyzed the interactions between the quality of life and the coping strategies of 100 patients treated for breast cancer and their caregivers. Data were collected after diagnosis, at the end of treatment, and 6?months after treatment with the Quality of Life Questionnaire-C30 (QLQ-C30), Duke Health Profile and Ways of Coping Checklist for both patients and caregivers. The theoretical model was tested using a typology of patients and mixed model analyses. The quality of life of patients changed over time and no cluster effect was found. The influence of the sociodemographic characteristics, coping strategies (patients and caregivers) and the quality of life of caregivers on patient's quality of life were different according to the quality of life dimensions considered. To understand the adaptation of patients to their disease, it is therefore essential to look at whether the caregiver is capable of playing a supporting role.     

Emerging Genetic Counselor Roles within the Biotechnology and Pharmaceutical Industries: as Industry Interest Grows in Rare Genetic Disorders,How are Genetic Counselors Joining the Discussion?

Traditionally, the biotechnology and pharmaceutical industry (BPI) has focused drug development at the mass-market level targeting common medical issues. However, a recent trend is the development of therapies for orphan or rare disorders, including many genetic disorders. Developing treatments for genetic disorders requires an understanding of the needs of the community and translating genomic information to clinical and non-clinical audiences. The core skills of genetic counselors (GCs) include a deep knowledge of genetics and ability to communicate complex information to a broad audience, making GCs a choice fit for this shift in drug development. To date there is limited data defining the roles GCs hold within this industry. This exploratory study aimed to define the roles and motivation of GCs working in BPI, assess job satisfaction, and identify translatable skills and current gaps in GC training programs. The authors surveyed 26 GCs working in BPI in the United States; 79 % work for companies focused on rare disorders. GC positions in BPI are growing, with 57 % of respondents being the first GC in their role. GCs in BPI continue to utilize core genetic counseling competencies, though 72 % felt their training did not fully prepare them for BPI. These data suggest opportunities for exposure to BPI in GC training to better prepare future generations of GCs for these career opportunities. GC satisfaction was high in BPI, notably in areas traditionally reported as less satisfying on the National Society for Genetic Counselors Professional Status Survey: salary and advancement opportunities. BPI’s growing interest in rare disorders represents a career opportunity for GCs, addressing both historic areas of dissatisfaction for GCs and BPI’s genomic communication needs.     

Noncompetition Agreements: How Informed Are Counselors?

A noncompetition agreement is a contract between employer and employee prohibiting the practice of a trade or profession for a specified time or within a specified region upon an employee's leaving an employer's hire (A. Valiulis, 1985). The authors assessed American Mental Health Counselor Association members' knowledge of the legal bases for these contracts and their agreement with the legal opinions and also assessed the degree of similarity and dissimilarity between members' knowledge of and agreement with the legal opinions. Results showed that counselors are better prepared to look after the welfare of their clients than their own employment interests. Implications for counselor training are discussed.     

Why are Women More Religious than Men? Do Risk Preferences and Genetic Risk Predispositions Explain the Gender Gap?

Risk preference theory argues that the gender gap in religiosity is caused by greater female risk aversion. Although widely debated, risk preference theory has been inadequately tested. Our study tests the theory directly with phenotypic and genetic risk preferences in three dimensions—general, impulsive, and sensation-seeking risk. Moreover, we examine whether the effects of different dimensions of risk preferences on the gender gap vary across different dimensions of religiosity. We find that general and impulsive risk preferences do not explain gender differences in religiosity, whereas sensation-seeking risk preference makes the gender gap in self-assessed religiousness and church attendance insignificant, but not belief in God, prayer, or importance of religion. Genetic risk preferences do not remove any of the gender gaps in religiosity, suggesting that the causal order is not from risk preference to religiosity. Evidence suggests that risk preferences are not a strong predictor for gender differences in religiosity.     

Life Trajectories, Genetic Testing, and Risk Reduction Decisions in 18–39 Year Old Women at Risk for Hereditary Breast and Ovarian Cancer

This qualitative study identified four life trajectories that influenced the decision in young women to have genetic testing for mutations in BRCA1/2 and subsequent risk reduction decisions after receiving a positive mutation result. Fifty nine women between the ages of 18–39 years were interviewed in this grounded theory study, 44 of those tested were found to have a mutation in either BRCA1 or BRCA2. Of those with a mutation, 23 had no history of cancer and 21 had a breast cancer diagnosis. Analysis of the 44 participants tested found that risk reducing decisions were related to the life trajectories that preceded genetic testing. These life trajectories included: 1) Long-standing awareness of breast cancer in the family, 2) Loss of one’s mother to breast cancer at a young age, 3) Expression of concern by a health care provider, and 4) Personal diagnosis of breast cancer. Understanding possible influences behind decision making for genetic testing and risk reduction in young women may assist health care providers in offering age appropriate guidance and support.     

Pregnant Genetic Counselors in an Era of Advanced Genomic Tests: What Do the Experts Test Prenatally?

Advanced genomic tests in pregnancy, such as chromosomal microarray analysis (CMA), provide higher detection rates yet often produce probabilistic and uncertain information. This study aimed to understand how the most knowledgeable patients, i.e., pregnant genetic counselors, act in their own pregnancies, thereby gaining insight into the impact of patients’ knowledge on the diagnostic process. Seventeen interviews were conducted with Israeli genetic counselors, either pregnant or up to 2 years post-pregnancy. A third of the participants chose not to have CMA while two thirds underwent it despite no detected abnormalities. Although knowledge was the main motivation, counselors varied in the desired degree of information. Two thirds of those opting for CMA wished to have all findings identified whereas roughly one third asked for a targeted platform seeking to avoid uncertain results. Counselors were not quick to adopt new tests such as whole-exome sequencing. Being knowledgeable was described as promoting a sense of control yet also being a source of stress and moral dilemmas. While the basic premise of informed consent is crucial, it does not always make things easier for educated patients. Consequently, raising levels of patient knowledge is only a limited step forward in the search for best practice.     

Black Women and White Women: Do Perceptions of Childhood Family Environment Differ?

INTRODUCTION: Few studies have examined racial differences in perceptions of childhood. Little is known about how Blacks perceive their own families, particularly the family environment that they experienced in childhood. METHODS: A community sample of 290 women (55% White, 45% Black) from two-parent families, heterogeneous in age and social class, was examined using a self-administered questionnaire, including the Family Environment Scale (FES), followed by a focused interview. Siblings were used as collateral informants. RESULTS: The psychometric properties of the FES showed remarkably little variation by race: The internal scale reliability, correlations between scales, and factor structures were quite similar. Although both White and Black women reported good childhood family environments, Black women when compared with White women rated their families of origin as more cohesive, organized, and expressive, and lower in conflict. Sibling responses corroborated these findings. DISCUSSION: This study addresses a gap in the research literature and provides important evidence of strengths in Black family relationships as reported by a community sample of women. The psychometric properties of the FES, found to be strong for families of both races, lends support to our findings and those of other researchers who have used this measure.