Expanding Roles: A Survey of Public Health Genetic Counselors

According to the 2008 National Society of Genetic Counselors (NSGC) Professional Status Survey (PSS), 31 genetic counselor respondents reported spending at least 50% of their time in the area of public health. The NSGC Public Health Special Interest Group (PHSIG) had 49 dues-paying members in 2009. The purpose of this study was to identify the work settings and public health activities in which genetic counselors participate. A novel online survey was disseminated over the NSGC PHSIG Listserv. Forty-one percent (n = 13) of public health genetic counselor respondents worked in a university medical system, while 53% (n = 17) were grant-funded and held a non-clinical appointment. The most common public health activities included educating healthcare professionals (82%) and community members (61%), research (55%), grant writing (55%) and grant administration (36%). Most respondents (82%) reported learning certain public health skills outside of their genetic counseling training programs. Differences in work settings were found, with a significantly greater percentage of public health genetic counselors working in government agencies. Genetic counselors have opportunities to become involved in public health activities as the scope of public health genetics grows. Furthermore, genetic counseling competencies are compatible with the Institute of Medicine’s “10 Essential Public Health Services.” The NSGC and genetic counseling training programs are encouraged to offer more public health learning opportunities for genetic counselors and genetic counseling students interested in this specialty area.     

Career Research Interests and Training of Genetic Counseling Students

Research is important to validate clinical services, provide information on the effectiveness of practice techniques, and develop the knowledge base of a clinical profession. Genetic counseling students from American Board of Genetic Counseling (ABGC) accredited training programs were surveyed to determine their career research interests and interest in pursuing a hypothetical doctoral degree in genetic counseling. Genetic counseling program directors were surveyed to assess the emphasis on research training within their programs. A substantial number (46%, n = 92) of genetic counseling students are interested in performing research in their careers and many (40%, n = 80) would pursue a doctoral degree in genetic counseling if it was available. Students and directors from programs with a thesis requirement reported a significantly higher emphasis on career research preparation than those from programs without a thesis requirement. The results of this study indicate that future genetic counselors are interested in contributing to the research base that will advance the field. This study suggests a need to strengthen research training within ABGC accredited graduate programs and explore the development of a doctoral degree option in genetic counseling.     

Transition to the Clinical Doctorate: Attitudes of the Genetic Counseling Training Program Directors in North America

In North America, genetic counseling is an allied health profession where entry level practitioners currently must hold a master’s degree earned from a graduate program accredited by the American Board of Genetic Counseling. This is one of many health care professions that could transition to an entry level clinical doctorate degree. This study explored the attitudes of genetic counseling training program directors toward such a transition. Thirty-one North American program directors were invited to complete an online survey and a follow-up telephone interview. Twenty-one program directors completed the survey and ten directors also completed a follow up phone interview. There was disagreement among the respondents on the issue of transitioning to a clinical doctorate degree (nine in favor, six against and six undecided). Respondents disagreed about whether the transition would lead to higher salaries (six yes, eight no, and seven unsure) or increased professional recognition (eight yes, eight no, and four unsure). Approximately half (n = 10) of directors were not sure if the transition to a clinical doctorate would help or hurt minority recruitment; six thought it would help and four thought it would hurt. However, the majority (n = 13) thought a clinical doctorate would help genetic counselors to obtain faculty positions. If the field transitions to a clinical doctorate, 11 of the directors thought their program would convert, seven were unsure and one thought their program would shut down. Themes identified in interview data included 1) implications for the profession 2) institution-specific considerations and 3) perception of the unknown. Opinions are quite varied at this time regarding the possible transition to the clinical doctorate among genetic counseling training program directors.     

Providers’ Perceptions and Practices Regarding <Emphasis Type="BoldItalic">BRCA1/2</Emphasis> Genetic Counseling and Testing in African American Women

We examined healthcare providers’ perceptions of genetic counseling and testing in African American women at moderate to high-risk of carrying a BRCA1/2 mutation. We conducted 20 in-depth interviews with genetic counselors (n = 5), medical oncologists (n = 8), obstetrician/gynecologists (n = 2) and surgeons (n = 5). Interviews were audiotaped, transcribed and independently coded by two individuals using a content analysis approach. Seven themes emerged relevant to providers’ perceptions of African American women’s use of BRCA1/2 genetic services: access factors, cultural beliefs and preferences, effects of testing, patient motivators for genetic counseling and testing, patient-provider communication, reasons for provider referral, and reasons for patient refusal. Providers identified individual- and system-level barriers to African American women’s use of genetic services, including lack of follow-up after referrals to genetic specialists and challenges to obtaining financial coverage for under- and uninsured high-risk women. Results have implications for physician and patient education regarding appropriate referrals to and uptake of genetic services in at-risk African American women.     

Mentoring Nurses in Familial Cancer Risk Assessment and Counseling: Lessons Learned From a Formative Evaluation

Background. As familial cancer genetic services moves into community practice increased numbers of trained health professionals are needed to counsel individuals seeking cancer risk information. Nurses have been targeted to provide cancer risk assessment and counseling. To help prepare nurses for this role, a 5-day training in familial cancer risk assessment and counseling followed by a long-distance mentorship to support continued skill development in the work environment was conducted by Fox Chase Cancer Center, Philadelphia, PA. Methods. Four cohorts (N = 41) have completed the training and were randomized to either an immediate or delayed mentorship. A formative evaluation assessed the nurse’s ability to consult with other genetic health professionals and build self-efficacy in counseling skills via responses to questionnaire. A post-mentorship interview evaluated the usefulness, timing and length of the mentorship. Results. For both groups, there was a statistically significant improvement in self-efficacy for all skills from baseline to 6 months and an increased number of nurses consulting with genetic health professionals. All the nurses reported the value of the mentorship and those with less cancer risk counseling experience prior to the training needed support and resources for further skill and program development. Lessons learned from this formative evaluation are provided.     

Actors in the Classroom: The Dramatic Pedagogy Model of Counselor Education

Role playing is a fundamental component in the training of counselors to use counseling skills. However, role play activities commonly involve counseling students as clients or actors and hence have notable limitations. One training method widely practiced in the medical profession is the use of professional actors as patients. Although there are some examples in the literature of studies that have used actors for counselor training, most address only a specific topic or skill set. In this article, the authors propose the dramatic pedagogy model (DPM) as a comprehensive model for implementing client actors into the education of counselors. The DPM includes a set of pedagogical techniques and a structure for preparing actors and curriculum.     

Genetic Counselors’ Experiences with Adolescent Patients in Prenatal Genetic Counseling

Adolescents comprise a portion of women who present to genetic counselors prenatally. In this study, prenatal genetic counselors (N = 128) were surveyed regarding their perceptions of genetic counseling sessions for adolescent (ages 13–19) and adult (ages 20–34) patients. Counselors perceived differences in methods used to communicate risk information for adolescent versus adult populations. Respondents reported that it is more difficult for adolescents to understand prognostic information than adults. They also noted differences between adult and adolescent populations with respect to the people who typically accompany the patient to the session. Respondents stated that adolescents were accompanied by a parent, friend, or sibling, which differed from adults who reportedly were accompanied by a significant other, father of the pregnancy, or by no one. These findings suggest it is important to recognize that adolescent patients are in a unique stage of their development which may influence a prenatal genetic counseling session.     

The Experience of Leader-Led Peer Supervision: Genetic Counselors' Perspectives

As we proceed through our professional lives, it is essential that we challengeourselves in order to continue to develop our genetic counseling skills. Conferences, workshops,post-graduate courses, journal clubs, and involvement in professional organizations havebecome the traditional methods of continuing education for post-graduate geneticcounselors. While these forums address the need to stay updated on scientific orinformation-based topics, there is little available to counselors to promote growth incounseling skills. A group of Boston-based genetic counselors describe how their leader-ledsupervision group has established a setting to meet the needs of its members both forsupport and continued counseling training. We outline here the evolution of this group andhow it has become a valued part of our professional lives. We feel that the model of leader-ledpeer supervision holds great value in helping genetic counselors continue to enhancetheir interpersonal skills in a supportive, safe, and challenging environment. It is our hopethat others will elect to form similar groups in their own communities, thereby creating newopportunities for growth within the genetic counseling profession.     

Experiences of Altruism in the Therapeutic Relationship: Perspectives of Counselors‐in‐Training and Their Clients

The purpose of this phenomenological investigation was to explore experiences of altruism in the therapeutic relationship to better understand how counselors‐in‐training (CITs) and their clients mutually perceived the construct in sessions. Findings from interviews with clients (n = 14) included emotional–relational characteristics and cognitive–behavioral aspects of altruism by their counselors. Findings from interviews with CITs (n = 10) included explorations of the role of altruism in counseling, overall experiences of altruism in counseling sessions, and experiences of altruism with specific clients. Implications for practice and research are discussed.     

Characterization of the Practice and Attitudes of Genetic Counselors with Doctoral Degrees

Potential advantages and disadvantages of doctoral training in genetic counseling have been debated. In this study, individual interviews were conducted to characterize the practice and attitudes of genetic counselors who have achieved doctoral degrees in any field. Participants (N=31) were more likely to spend time in research and less likely to spend time in clinic than genetic counselors in general. Advantages identified by participants were consistent with theorized advantages, and included increased knowledge, wider research roles, additional opportunities and greater respect. Disadvantages identified by participants focused more on individual perspectives than previously theorized profession-wide disadvantages. These included increased time commitment and decreased patient contact. The attitudes of participants towards the development of doctoral training in genetic counseling were generally positive. The results suggest that doctoral training in genetic counseling would have more benefits than drawbacks for individuals pursuing this degree.     

Behavioral and Socio-emotional Functioning in Children with Selective Mutism: A Comparison with Anxious and Typically Developing Children Across Multiple Informants

We examined differences among 158 children, 44 with selective mutism (SM; M = 8.2 years, SD = 3.4 years), 65 with mixed anxiety (MA; M = 8.9 years, SD = 3.2 years), and 49 community controls (M = 7.7 years, SD = 2.6 years) on primary caregiver, teacher, and child reports of behavioral and socio-emotional functioning. Children with SM were rated lower than controls on a range of social skills, but the SM and MA groups did not significantly differ on many of the social skills and anxiety measures. However, children with SM were rated higher than children with MA and controls on social anxiety. Findings suggest that SM may be conceptualized as an anxiety disorder, with primary deficits in social functioning and social anxiety. This interpretation supports a more specific classification of SM as an anxiety disorder for future diagnostic manuals than is currently described in the literature. The present findings also have implications for clinical practice, whereby social skills training merits inclusion in intervention for children with anxiety disorders as well as children with SM.     

Publishing a Master’s Thesis: A Guide for Novice Authors

Publication of original research, clinical experiences, and critical reviews of literature are vital to the growth of the genetic counseling field, delivery of genetic counseling services, and professional development of genetic counselors. Busy clinical schedules, lack of time and funding, and training that emphasizes clinical skills over research skills may make it difficult for new genetic counselors to turn their thesis projects into publications. This paper summarizes and elaborates upon a presentation aimed at de-mystifying the publishing process given at the 2008 National Society of Genetic Counselors Annual Education Conference. Specific topics include familiarizing prospective authors, particularly genetic counseling students, with the basics of the publication process and related ethical considerations. Former students’ experiences with publishing master’s theses also are described in hopes of encouraging new genetic counselors to submit for publication papers based on their thesis projects.     

Patterns of Growth in Adaptive Social Abilities Among Children with Autism Spectrum Disorders

Adaptive social skills were assessed longitudinally at approximately ages 2, 3, 5, 9, and 13 years in a sample of 192 children with a clinical diagnosis of autism (n = 93), PDD-NOS (n = 51), or nonspectrum developmental disabilities (n = 46) at age 2. Growth curve analyses with SAS proc mixed were used to analyze social trajectories over time. Both individual characteristics and environmental resources emerged as key predictors of adaptive social behavior outcome. The gap between children with autism and the other two diagnostic groups widened with time as the social skills of the latter groups improved at a higher rate. However, within diagnostic groups, improvement ranged from minimal to very dramatic. Children with autism most at risk for problems with social adaptive abilities later in life can be identified with considerable accuracy at a very young age so they can be targeted for appropriate early intervention services.     

Genetic Testing Likelihood: The Impact of Abortion Views and Quality of Life Information on Women’s Decisions

Little is known about factors predicting the likelihood of choosing genetic testing in college aged women versus older women, including knowledge of quality of life (QOL) associated with a disorder. Using vignettes with female college students (Experiment 1: n = 257, mean age = 19.70 yrs) and female faculty/staff/alumni (Experiment 2: n _nulliparous = 83, mean age = 30.20 yrs; n _mothers = 53, mean age = 33.77 yrs), we examined the contribution of multiple factors to predicting genetic testing likelihood for cystic fibrosis. We investigated malleable situational factors (style of genetic risk presentation and providing QOL information including physical and social aspects) and stable dispositional factors (abortion views). Parity (i.e., prior births) was more influential in women’s genetic testing likelihood than was age. Greater acceptability of abortion for oneself and self-assessed knowledge following QOL information were predictors of higher testing likelihood for college students. Greater acceptability of abortion for another person was a predictor for nulliparous women. Abortion views moderated the effect of predictors for nulliparous women and mothers. Findings encourage genetic counselors to utilize QOL information to promote informed decision making through genetic testing.     

Interest and Beliefs About BRCA Genetic Counseling Among At-Risk Latinas in New York City

Background: Latinas are less likely to use genetic services (counseling and testing) for hereditary breast and/or ovarian cancer risk compared to other ethnic groups. Meanwhile, little is known about barriers to genetic counseling among Latinas at increased risk of inherited breast cancer. Methods: A two-phase pilot study was conducted to examine interest, barriers and beliefs about BRCA genetic counseling among at-risk Latinas in New York City and explore the potential for developing a culturally-tailored narrative educational tool for use in future studies. Phase 1 included quantitative telephone interviews (N = 15) with bilingual participants with a personal diagnosis at a young age and/or family history of breast and/or ovarian cancer. Quantitative results informed development of a narrative prototype educational presentation viewed by a subset of participants (N = 10) in Phase 2 focus groups. Results: Despite barriers, including lack of awareness/knowledge, concerns related to learning cancer risks of family members, and concerns about cost/health insurance, participants reported positive attitudes, beliefs and interest in learning about BRCA genetic counseling. Further, significant increases in knowledge were demonstrated from pre-post presentation (p = 0.04). Conclusion: There is an unmet need to educate at-risk Latinas about BRCA genetic counseling. Culturally-tailored educational materials including narratives may increase knowledge about BRCA genetic counseling among this underserved group. The effectiveness of these approaches should be tested in future research with larger samples.     

Social Skills Deficits and Vocal Characteristics of Children with Social Phobia or Asperger’s Disorder: A Comparative Study

Social skills deficits are commonly reported among children with social phobia (SP) and children with Asperger’s Disorder (AD); however, a lack of direct comparison makes it unclear whether these groups, both of which endorse the presence of social anxiety, have similar or unique skills deficits. In this investigation, the social behaviors of children with SP (n = 30) or AD (n = 30) were compared to a typically developing (TD) peer group (n = 30) during structured role play interactions. Data were analyzed using blinded observers’ ratings of overt behaviors and digital vocal analysis of verbal communication. Compared to children with AD and TD children, children with SP exhibited less overall social skill, an ineffective ability to manage the conversational topic (pragmatic social behavior), and deficient speech production (speech and prosodic social behavior). There were no differences in observer ratings between children with AD and TD children. However, using digital analysis of vocal characteristics (i.e., intensity, pitch), distinct vocal patterns emerged. Specifically, children with AD spoke more softly than TD children, and had lower vocal pitch and less vocal pitch variability than children with SP. This pattern may be subjectively heard as monotonic speech. Consistent with a vocal pattern associated with heightened anxiety, children with SP spoke more softly and had less voice volume variation than TD children, and had higher vocal pitch and more vocal pitch variability (jitteriness) than children with AD. Clinical implications of these findings are discussed.     

Microcounseling: the counselor as trainer

The skills of the counselor are too important to be used only in the guidance office. The counselor should move into the school and the community to teach others the various skills of counseling and interpersonal communication. Microcounseling is a systematic method for teaching counseling skills in a short period of time. The author explains the relationship of microcounseling and counselor education to the role of the practicing counselor. He believes that conducting systematic training programs in such skills as microcounseling should become an important role for counselors.     

Further Evidence of the Reliability and Validity of the Multidimensional Anxiety

The psychometric properties of the Multidimensional Anxiety Scale for Children (MASC) were examined in adolescent psychiatric inpatient samples. In Study 1 (n = 287), confirmatory factor analyses provided satisfactory fit for the four-factor (comparative fit index; CFI = 0.856) and higher-order (CFI = 0.854) solutions. Using parcels as items, the fit of the four-factor model was improved substantially (CFI = 0.935). Next, in the bifactor analyses, support was attained for a model that included a general factor and four domain specific subfactors. In Study 2 (n = 195 inpatient youths), the MASC showed good scale reliability and concurrent validity. Results of the receiver operating characteristic curve and binary logistic regression analyses provided adequate evidence for discriminative validity. In Study 3 (n = 40), test–retest reliability of scores on the MASC-10 scale over a 3-week period was adequate (r _tt = 0.83, p < 0.001) for children ages 8 to 11 years.