Genetic counseling graduate training to address religion and spirituality in clinical practice: A qualitative exploration of programs in North America.

Patients receiving clinical genetics services often navigate emotionally difficult situations and may utilize their faith as a source of support, an aid in decision-making, or a core coping strategy. Although patients have expressed interest in discussing their religious or spiritual (R/S) beliefs with their genetic counselor (GC), GCs may avoid such conversations because they feel they do not have the necessary skills to discuss R/S beliefs (Reis, Baumiller, Scrivener, Yager, & Warren, 2007). This qualitative study explored how GC programs in North America currently prepare their students to discuss R/S matters with their patients. The aims of this study were to identify (1) the R/S topics genetic counseling programs currently cover in the curriculum, (2) how genetic counseling programs evaluate their students within the R/S topics and activities that are included in the curriculum, and (3) the value or importance placed on R/S training by genetic counseling program directors. Leaders of 12 (36%) of the 33 eligible GC programs at the time of the study participated in a semi-structured phone interview. Their responses were coded using open and axial coding techniques and analyzed using grounded theory. Results revealed that R/S issues are often covered during the psychosocial portions of the curriculum through writing assignments, in class exercises, and role plays. Almost all participating programs include information on pastoral care services, but have little to no training about specific R/S beliefs or the use of spiritual surveys. While participating program directors emphasized that it is critical for students to be prepared to hold conversations about patients' R/S beliefs, the strategies used to prepare students are inconsistent and often not evaluated. We provide suggestions for enriching the R/S training in genetic counseling graduate programs in order to prepare students to facilitate discussions around patients' religion and/or spirituality in genetic counseling sessions.

Introduction to the special issue: toward diversity and cultural competence in genetic counseling.

This introduction provides an overview of the professional issues and original research papers in this special issue. The articles address workforce challenges and/or cross-cultural education and communication with culturally and religiously diverse clients. Additional suggestions are made for moving the profession of genetic counseling toward diversity and cultural competence.

Enriching the genetic counseling recruitment pipeline: a national cross-sectional study of public high school counselors.

Early awareness of careers is helpful in recruiting students into a career pipeline. School counselors are among the top resources that students turn to when seeking advice about choosing their career. Studies show that high school is the ideal time to generate interest in the genetic counseling career, especially for minorities. This novel study of 291 high school counselors working in ethnically diverse public school districts in the United States examined to what extent members of this important group discuss genetic counseling as a career option with their students. The findings indicate that the majority of school counselors in this study (83%) did not discuss genetic counseling with their students, citing a lack of resources and lack of student interest as the major barriers. Suggestions of ways to increase high school counselors' awareness of the genetic counseling career in order to enhance the goal of enriching recruitment of ethnic minorities into the genetic counseling pipeline are presented.

A cross sectional study exploring factors impacting recruitment of African American college students into the genetic counseling profession.

African Americans account for about 12.7% of the United States population, but only 1% of the National Society of Genetic Counselors' membership identifies as African American. Since individuals often seek health care from providers sharing similar backgrounds, training genetic counselors from diverse backgrounds is critical. Psychology and biology students (N=552) at four universities completed a self-administered online survey assessing the influence of genetic counseling awareness, demographics, and career decisions on students' interest in pursuing genetic counseling as a career. More African Americans (83%) than Caucasians (62%) reported having chosen a career (p< or = .001). Of the 65% of students who indicated interest in the career description of genetic counseling, fewer African Americans (50%) than Caucasians (74%) had heard of genetic counseling (p< or = .001). Specific strategies to overcome recruiting barriers such as early career selection and lack of awareness of the genetic counseling career among African Americans are suggested.

High school biology/life science teachers' presentation of genetic counseling and health care career options in their classrooms.

Studies show teachers play an influential role in the career decision-making process of students and early knowledge of genetic counseling (GC) increases the likelihood students will consider this career option. This quantitative study is the first to explore the presentation of GC and other health care career options by high school (HS) biology/life science (B/LS) teachers in their classrooms. Our findings indicate most B/LS teachers present GC as a career option to HS students, agree it complements classroom activities, and perceive students as interested in learning about the profession. However, teachers note many barriers to spending class time presenting GC careers. Consequently, a substantial number of teachers spent a minimal amount of time presenting health care careers in general. We discuss ways genetic counselors can enhance career resources, reduce barriers, and foster student interest in pursuing a career in GC by developing partnerships with HS B/LS teachers.

A family history demonstration project among women in an urban Appalachian community.

BACKGROUND: Family health history (FHH) is promoted to consumers by the Surgeon General as a tool to improve health and prevent disease. However, few FHH resources exist for medically underserved populations such as the urban Appalachian community in Southwest Ohio. OBJECTIVES: To engage and educate urban Appalachian women about the importance and collection of their own FHH. METHODS: Researchers partnered with six community organizations to develop a model Family History Demonstration Project. Focus groups were held with urban Appalachian women to determine how they would like to learn about their FHH. Resources and an educational intervention were developed based on focus group findings with input from the academic and community partners. Participants in the project recorded their family history and evaluated the education sessions and materials. RESULTS: Eleven fact sheets and four educational presentations were developed based on feedback from the target community. One hundred women participated in two family history education sessions. Learning objectives for both education sessions were met. All participants recorded their family history electronically or on paper and 91% of participants found the first education session (ES1) very helpful at teaching the importance of FHH. CONCLUSIONS: Community organizations and university researchers partnered to develop a model Family History Demonstration Project with input from community members. Evaluations of the project were positive. Future efforts should focus on sustainable dissemination of the educational programs and resulting health outcomes.

Employability of genetic counselors with a PhD in genetic counseling.

The development of a PhD in genetic counseling has been discussed for more than 20 years, yet the perspectives of employers have not been assessed. The goal of this qualitative study was to gain an understanding of the employability of genetic counselors with a PhD in genetic counseling by conducting interviews with United States employers of genetic counselors. Study participants were categorized according to one of the following practice areas: academic, clinical, government, industry, laboratory, or research. All participants were responsible for hiring genetic counselors in their institutions. Of the 30 employers interviewed, 23 envisioned opportunities for individuals with a PhD degree in genetic counseling, particularly in academic and research settings. Performing research and having the ability to be a principal investigator on a grant was the primary role envisioned for these individuals by 22/30 participants. Employers expect individuals with a PhD in genetic counseling to perform different roles than MS genetic counselors with a master's degree. This study suggests there is an employment niche for individuals who have a PhD in genetic counseling that complements, and does not compete with, master's prepared genetic counselors.

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.

A case for genetics education: collaborating with speech-language pathologists and audiologists.

Because speech-language pathologists (SLPs) and audiologists (AUDs) are among the first referrals for parents of children exhibiting feeding, speech, language, hearing, and balance difficulties, it is important for SLP and AUD professionals to recognize genetic causes of and contributions to complex and Mendelian communication disorders. We review genetics in the curricula of speech-language pathology and audiology programs and obstacles to its integration throughout curricula. We present suggestions about how SLPs and AUDs can aid in diagnosis and contribute their clinical expertise in characterizing phenotypes, followed with a review of a new genetics-education website developed by the National Coalition for Health Professional Education in Genetics (NCHPEG), the University of Cincinnati, and the National Society of Genetic Counselors. The need to integrate genetics content into curricula and continuing education across disciplines is clear, as is the need for and benefit of multidisciplinary collaboration in patient care. The NCHPEG site for speech-language pathology and audiology begins to address those needs and may serve as a practical model for future multidisciplinary collaborations between genetics professionals and other health professions.

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.

Spiritual assessment in genetic counseling.

One hundred and twenty seven full members of the National Society of Genetic Counselors participated in this study exploring current spiritual assessment practices of genetic counselors and reactions to a spiritual assessment tool. While 60% of genetic counselors reported they had performed a spiritual assessment within the past year, fewer than 8.7% of these counselors assessed spirituality in more than half of their sessions. Counselors reporting high perceived relevance of spiritual assessment performed an assessment more frequently than those reporting a low perceived relevance. Barriers to spiritual assessment included lack of time, insufficient skills, and uncertainty regarding the role of spiritual assessment within genetic counseling. Almost two-thirds of counselors expressed that having a spiritual assessment tool would increase their ability to elicit relevant information. These data suggest a need for increased training regarding the methods for and relevance of spiritual assessment in genetic counseling. Recommendations for future directions of research are explored.

An interdisciplinary approach to introducing professionalism.

OBJECTIVE: To provide interdisciplinary structured activities in academic and clinical settings for introducing the concept of professionalism to health professions students. DESIGN: Undergraduate and graduate students from 8 health care disciplines including pharmacy, nursing, communication sciences and disorders, dietetics and nutrition science, genetic counseling, advanced medical imaging, medical technology, and physical therapy participated in an orientation program focusing on interdisciplinary health care and professionalism, as well as a field experience. ASSESSMENT: Survey results from both components (orientation, n = 284; field experience, n = 123) indicated that the project was valuable in increasing students' awareness of (1) the importance of professionalism in the clinical setting and (2) the potential contributions of their profession to the health care team. CONCLUSION: Health professions curricula should include interdisciplinary learning opportunities that enhance collaboration, collegiality, and professionalism among future members of the health care team.

Ethical issues in cancer genetics: I 1) whose information is it?

This article presents and discusses four clinical cases that exemplify the complexity of ethical dilemmas concerning the provider's obligation to disclose or withhold genetic information from patients. Case 1: What is the responsibility of the cancer genetics provider to ensure that a positive test results is shared with distant relatives? Case 2: To ensure that results go to at-risk relatives, do we have the right to ignore the wishes of the designated next-of-kin? Case 3: Do we have the right to reveal a familial BRCA1 mutation to a patient's relative, who is at 50% risk? Case 4: Do we have an obligation to reveal that a patient is not a blood relative and therefore, not at risk to have inherited a familial mutation? These cases form the basis for discussing the provider's dual obligations to keeping patient confidentiality and informing patients and families about risk (i.e. duty to warn). We also provide a summary of consensus points and additional discussion questions for each case.

Genetic counselors and research: current practices and future directions.

Members of the genetic counseling community have debated the need for doctoral degree programs to further advance the profession. However, genetic counselors' interest in conducting independent research and attitudes toward obtaining a doctoral degree in genetic counseling has not been assessed in more than a decade. We designed a comprehensive web-based survey to characterize the current research values and practices of genetic counselors. Respondents were asked to self-report their current research involvement, their specific role in research activities, and their interest in performing research in the future. The study showed that a significant number of genetic counselors (84.5%) have conducted previous research, and 69.4% of respondents plan to perform research in the future. These results reflect the maturation of the genetic counseling field, in that a substantial number of genetic counselors consider active involvement in research to be a core role. The study also showed that 34.1% of respondents have high interest in a hypothetical PhD in Genetic Counseling, suggesting that the profession is primed for the development of doctoral degree training options.

Assessment of allied health graduates' preparation to integrate genetic knowledge and skills into clinical practice.

Allied health professionals are in a unique position to address the concerns of and provide information to clients with genetic disorders. This study assessed the preparation of recent graduates of allied health training programs to provide these services by determining their (1) professional practices, (2) confidence in performing skills that require genetic knowledge, (3) extent of genetic training, and (4) interest in genetic topics. A survey was sent to 698 alumni of six allied health training programs who graduated between 1997 and spring 2002 from a midwestern university. A total of 235 alumni responded to the survey (34%). Forty-three percent of respondents reported discussing at least one of eight topics, such as patterns of inheritance, recurrence risks, genetic testing, and characteristics of genetic conditions and/or prognosis. Referrals for genetic services were made by 12.6% of respondents. Of the 10 genetic assessment, counseling, and referral skills that were assessed, eliciting family history was the skill most commonly performed. Many respondents discussed the genetic basis of disorders, provided guidance to clients about the impact of their condition, and corrected misconceptions. Only 22% of the respondents rated the amount of genetic knowledge/skills covered in training as satisfactory, and 78% rated it as marginal or none. However, there is strong interest in genetic topics, especially related to common disorders. A correlation was found between the respondents' training and confidence in performing these skills. Allied health professionals are providing genetic-related services in clinical settings. However, sufficient instruction in genetic knowledge and skills is not being provided in their undergraduate and graduate training programs. Preservice and continuing educational interventions designed to prepare allied health professionals for the genetic age are needed. This study establishes baseline data regarding professional practices and perceived clinical confidence related to genetics that can be used to develop and evaluate the effectiveness of future educational interventions.

Outcomes of a genetics education program for nursing faculty.

A multifaceted educational program designed to teach nursing faculty about genetics was first offered in 1997 and subsequently repeated on an annual basis. The specific aims of the program were to: 1) increase nursing faculty knowledge about genetics and its clinical application, and 2) increase genetics content taught in entry-level nursing education programs. The major components of the program included an annual Genetics Summer Institute (GSI), pre-planned follow-up strategies, and continuing education offerings. Measured outcomes included significant improvement in nursing faculty genetics knowledge and increased amounts of genetics content in their curricula. The majority of surveyed faculty focused curriculum change efforts on lectures or courses for which they were personally responsible. Thirty-one percent were working on, or had developed, elective nursing genetics courses after attending a GSI. These findings indicate that this program provided the necessary foundational instruction and resources to enable nursing faculty participants to bring about change in their curricula.