Spanish language concordance in genetic counseling sessions in the United States: Counselor experiences and perceptions of its effects on processes and outcomes.

Prior research suggests language concordance positively affects physician-patient communication and their relationship, but few studies have investigated language concordance in genetic counseling sessions for Spanish-speaking patients. This study explored Spanish-speaking genetic counselors' experiences and perceptions of the effects of Spanish language concordance on session processes and outcomes using the Reciprocal-Engagement Model (REM) of practice as a conceptual framework. There are 17 REM goals associated with four goal factors. A secondary purpose was to explore whether perceived effects are modified when the genetic counselor identifies as Latinx. Ten Latina and nine non-Latina Spanish-speaking genetic counselors who practice in the U.S. participated in semi-structured phone interviews. Directed content analysis yielded four themes reflecting how spoken language concordance promotes REM goal factors (Understanding and Appreciation, Support and Guidance, Facilitative Decision-Making, and Patient-Centered Education) and individual goals within each factor. Six additional themes also emerged: Patients feel grateful/relieved to have a genetic counselor who communicates directly in Spanish; Challenges are lessened (e.g., no need for an interpreter); Language interacts with other cultural similarities to achieve REM goals; Use of Spanish conveys genetic counselor is 'going above and beyond' for patients; Communicating medical information is difficult even when Spanish proficient; and Genetic counselor still able to achieve REM goals without language concordance. There were no apparent thematic differences between Latina and non-Latina genetic counselors. Results suggest language concordance positively influences relationship building and communication and facilitates achievement of REM goals. Proficiency in more than one language is 'value added' for genetic counseling services and should be encouraged in genetic counseling graduate programs and continuing education opportunities. Future research could assess patient perceptions of genetic counseling sessions in which the genetic counselor and patient use the patient's preferred language.

Differences in genetic counseling student responses to intense patient affect: A study of students in North American programs.

Research indicates genetic counseling patients often experience intense emotions. No studies, however, have investigated how genetic counseling students respond to patient affect. This survey study investigated student responses to patient emotions and select factors affecting their responses. One-hundred fifty-one genetic counseling students in North American programs wrote a response to each of three hypothetical prenatal scenarios, identical except for the patient affect expressed (anger, fear, or sadness). They also completed measures of empathy tendency and tolerance of negative affect and demographic questions. Multivariate analysis of covariance (MANCOVA), used to analyze the effects of major study variables on the types of responses given by participants, was significant. Follow-up univariate ANCOVAs indicated small to moderate effect sizes for student clinical experience, race/ethnicity, and relationship status within and across scenarios. For example, as number of patients counseled increased, participants used more feeling reflections and fewer self-involving statements. There were no significant differences in responses due to empathy tendency or affect tolerance. Most common responses were information provision and feeling reflections for the Anger scenario, information provision for the Fear scenario, and influencing responses for the Sadness scenario. Responses to each scenario typically involved multiple thoughts (range: 1-14; means ranged from 3.25 in the Sadness scenario to 3.62 in the Fear scenario). Most students (82%) reported the Anger scenario was the most difficult. Thematic analysis of reasons a scenario was difficult yielded four themes: Discomfort with situation/emotion, Positive countertransference, Uncertain how to respond, and Negative countertransference. Findings that clinical experience affects how participants responded to patient affect support the essential role of applied experience. Findings also support training and supervision to help genetic counseling students in North America learn ways to respond to strong patient emotions and recognize and manage countertransference.

Content analysis of Journal of Genetic Counseling research articles: A multi-year perspective.

Content analyses of published papers in journals inform readers, editors, and members of the profession about historical publication patterns and how the journal has represented the field. This study is a content analysis of original research papers published in the Journal of Genetic Counseling from January 2011 through December 2017. This is the first study of its kind for the flagship journal of the National Society of Genetic Counseling. Of 794 papers published in the 7-year period, 428 were original research included in the analysis. Content analysis yielded categories reflecting the types of data analyses, genetic counseling practice specialties, characteristics of the study sample, and major topics/issues investigated in each study. There was an overall positive linear trend in the number of articles published during this period (p = .002). Approximately equal percentages of studies used qualitative (34%), quantitative (31%), and mixed (35%) analyses, and these proportions did not vary significantly across volumes (p = .73). Cancer (27%), prenatal (13.3%), and general genetics (12.6%) were the most prevalent specialties represented. The number of studies about prenatal and pediatrics was less, and the number of studies about neurogenetics was greater than would be expected based on the clinical workforce (p<.001). Patients were the most common sample (55.6%). While there was a significant increase in the number of articles with diverse samples (p = .001), the proportion of such articles did not increase over time (p = .86). The most common content areas were genetic counseling practice (16.8%); attitudes, perceptions, and beliefs about genetics services (16.1%); and decision-making (14.5%). In contrast, relatively few studies focused on laboratory genetic counselor, male, gender non-conforming, and adoptee populations. The trends and gaps highlighted in this content analysis can inform future research endeavors.

Effects of monitoring versus blunting on the public's preferences for information in a hypothetical cancer diagnosis scenario.

Monitoring and blunting are coping styles that characterize how people respond when faced with personally threatening situations. High monitors tend to pay more attention to, scan for, and amplify threatening cues; high blunters tend to avoid information and seek distractions when faced with a threatening event. This study sought to investigate possible differential effects of monitoring and blunting coping styles on information preferences in a hypothetical cancer diagnosis scenario in the adult general public of Minnesota. In a survey administered at a large public venue (2016 Minnesota State Fair), participants were asked to imagine they carried a gene mutation and were diagnosed with colon cancer. They indicated their information preference [modified Cassileth Information Styles Questionnaire (MCISQ)], completed two coping style measures [Miller Behavioral Style Scale (MBSS) and Threatening Medical Situations Inventory (TMSI)], rated their perceived severity of colon cancer (low, moderate, high), and answered demographic questions. Eight hundred fifty-five individuals provided usable data. Participants classified as monitors on the TMSI had significantly higher MCISQ scores (i.e., preferred more information) than those classified as blunters (p = .004). Those scoring high on monitoring and low on blunting on the MBSS preferred significantly more information than those scoring high on both monitoring and blunting (p = .04). Linear regression analysis revealed being a monitor (TMSI), scoring high on monitoring (MBSS), rating colon cancer as more severe, and having a higher education level were significant positive predictors of MCISQ scores. Results suggest individual differences in coping style, perceived severity, and education level affect desire for information. Genetic counselors should consider these patient characteristics (e.g., asking patients about their information preferences) and tailor their approaches accordingly.

Familial implications of autoimmune disease: Recurrence risks of alopecia areata and associated conditions in first-degree relatives.

Alopecia areata (AA), a complex autoimmune hair loss condition, affects approximately 2.1% of the population. Individuals with AA have increased susceptibility to diseases such as atopy and autoimmune disorders, but little is known about first-degree relatives' risk to develop AA and associated conditions. Genetic counseling for multifactorial conditions, including autoimmune disease is complex, but potentially valuable. Anecdotally we know patients with AA ask medical providers about recurrence risk for family members as well as question whether they and their relatives are at risk for other conditions. Data on AA recurrence risks and comorbid conditions among relatives of affected individuals comprise valuable information that may guide clinical management by genetic counselors. This study investigated the recurrence risk of AA and compared the prevalence of associated conditions among first-degree relatives to the general population. The study also assessed the validity of self-reported conditions for a subset of participants. Relatives of individuals with AA (N = 155), recruited from the National Alopecia Areata Foundation Registry, completed telephone surveys about their personal medical history for 70 medical conditions associated with AA. Medical records for 60 participants were compared to self-reported responses. One-sided proportional tests, in which it is assumed the disease prevalence in first-degree relatives is higher than for those in the general population, yielded a 7.8% estimated risk of AA versus the general population prevalence of 2.1%. Furthermore, there are increased risks of 33 associated conditions, including atopy and other autoimmune conditions. Comparison of medical reports to self-reported conditions indicated only 12% was incongruent. The findings may help genetic counselors better serve patients and their families by informing them of lifetime risk estimates of developing AA and comorbid conditions, resulting in early diagnosis of autoimmune diseases in AA families. Findings also provide evidence supporting the validity of self-report data in AA families.

Genetic counselor and proxy patient perceptions of genetic counselor responses to prenatal patient self-disclosure requests: Skillfulness is in the eye of the beholder.

Research demonstrates some genetic counselors self-disclose while others do not when patients' request self-disclosure. Limited psychotherapy research suggests skillfulness matters more than type of counselor response. This survey research assessed perceived skillfulness of genetic counselor self-disclosures and non-disclosures. Genetic counselors (n = 147) and proxy patients, women from the public (n = 201), read a hypothetical prenatal genetic counseling scenario and different counselor responses to the patient's question, What would you do if you were me? Participants were randomized either to a self-disclosure study (Study 1) or non-disclosure study (Study 2) and, respectively, rated the skillfulness of five personal disclosures and five professional disclosures or five decline to disclose and five redirecting non-disclosures. Counselor responses in both studies varied by intention (corrective, guiding, interpretive, literal, or reassuring). Participants also described what they thought made a response skillful. A three-way mixed ANOVA in both studies analyzed skillfulness ratings as a function of sample (proxy patient, genetic counselor), response type (personal, professional self-disclosure, or redirecting, declining non-disclosure), and response intention. Both studies found a significant three-way interaction and strong main effect for response intention. Responses rated highest in skillfulness by both genetic counselors and proxy patients in Study 1 were a guiding personal self-disclosure and a personal reassuring self-disclosure. The response rated highest in skillfulness by both samples in Study 2 was a redirecting non-disclosure with a reassuring intention. Proxy patients in both studies rated all literal responses as more skillful than genetic counselors. Participants' commonly described a skillful response as offering guidance and/or reassurance. Counselor intentions and response type appear to influence perceptions, and counselors and patients may not always agree in their perceptions. Consistent with models of practice (e.g., Reciprocal-Engagement Model), genetic counselors generally should aim to convey support and guidance in their responses to prenatal patient self-disclosure requests.

Improving recommendations for genomic medicine: building an evolutionary process from clinical practice advisory documents to guidelines.

Genomic sequencing and multigene panel tests are moving rapidly into clinical practice for a range of indications, but the evidence to guide appropriate use is currently limited. Well-crafted advice is needed to reduce unjustified practice variation, minimize risk of error and harm to patients, and encourage best practices. In the absence of definitive evidence, provisional advice can be helpful if it clarifies the potential benefits and risks of different courses of action and identifies the knowledge gaps most important to address in future research. This paper proposes an evolutionary process starting with clinical practice advisory documents (CPADs) and culminating in clinical practice guidelines (CPGs), using two case examples to illustrate the need for this process. When evidence is limited, CPADs can clarify current practice options and identify key knowledge gaps. Added evidence can then support updates to the CPADs over time. Ultimately CPADs can provide the foundation for definitive CPGs as the evidence base matures. This approach addresses an important challenge in genomics and may be applicable to other fields in which technology and practice are outpacing evidence generation.

An exploration of novice genetic counselors' transitional challenges: Commencement is just the beginning.

Although transitional challenges exist in many professions, no research has explicitly investigated challenges novice genetic counselors encounter as they enter the workforce. This qualitative study explored challenges genetic counselors face when transitioning from student to practicing counselor and their strategies for managing them. Fifteen novice genetic counselors (~1-2 years post-degree experience), recruited via the National Society of Genetic Counselors, participated in semi-structured phone interviews. Interview questions explored professional and personal challenges faced in their first 6 months, how challenges changed over time, strategies they used to manage these challenges, and resources they thought would have been helpful to have from the beginning. Inductive analysis of interview data yielded themes including: interpersonal challenges with colleagues (e.g. handling differences of opinion); intrapersonal challenges (e.g. lacking confidence, not feeling ready to 'go solo'); patient care challenges (e.g. being viewed as young/inexperienced); and logistical challenges (e.g. billing). Personal challenges included moving to a new location, preparing for boards, establishing a work-life balance, and factors associated with one's significant others. Strategies to address challenges included seeking support and guidance from experienced genetic counselors and peers, using peer supervision groups, and involvement in community activities. Participants recommended connecting with recent graduates through national and local programs to facilitate the transition from student to genetic counselor. Results suggest the 'transition years' pose a variety of professional and personal challenges. Support and guidance are key to evolving from student to practicing counselor. Creating venues to help novice counselors make connections with colleagues and other recent graduates may be beneficial.

Elaboration of the Reciprocal-Engagement Model of Genetic Counseling Practice: a Qualitative Investigation of Goals and Strategies.

As the genetic counseling field evolves, a comprehensive model of practice is critical. The Reciprocal-Engagement Model (REM) consists of 5 tenets and 17 goals. Lacking in the REM, however, are well-articulated counselor strategies and behaviors. The purpose of the present study was to further elaborate and provide supporting evidence for the REM by identifying and mapping genetic counseling strategies to the REM goals. A secondary, qualitative analysis was conducted on data from two prior studies: 1) focus group results of genetic counseling outcomes (Redlinger-Grosse et al., Journal of Genetic Counseling, 2015); and 2) genetic counselors' examples of successful and unsuccessful genetic counseling sessions (Geiser et al. 2009). Using directed content analysis, 337 unique strategies were extracted from focus group data. A Q-sort of the 337 strategies yielded 15 broader strategy domains that were then mapped to the successful and unsuccessful session examples. Differing prevalence of strategy domains identified in successful sessions versus the prevalence of domains identified as lacking in unsuccessful sessions provide further support for the REM goals. The most prevalent domains for successful sessions were Information Giving and Use Psychosocial Skills and Strategies; and for unsuccessful sessions, Information Giving and Establish Working Alliance. Identified strategies support the REM's reciprocal nature, especially with regard to addressing patients' informational and psychosocial needs. Patients' contributions to success (or lack thereof) of sessions was also noted, supporting a REM tenet that individual characteristics and the counselor-patient relationship are central to processes and outcomes. The elaborated REM could be used as a framework for certain graduate curricular objectives, and REM components could also inform process and outcomes research studies to document and further characterize genetic counselor strategies.

Characterizing Clinical Genetic Counselors' Countertransference Experiences: an Exploratory Study.

Countertransference (CT) refers to conscious and unconscious emotions, fantasies, behaviors, perceptions, and psychological defenses genetic counselors experience in response to any aspect of genetic counseling situations (Weil 2010). Some authors theorize about the importance of recognizing and managing CT, but no studies solely aim to explore genetic counselors' experiences of the phenomenon. This study examined the extent to which clinical genetic counselors' perceive themselves as inclined to experience CT, gathered examples of CT encountered in clinical situations, and assessed their CT management strategies. An anonymous online survey, sent to NSGC members, yielded 127 usable responses. Participants completed Likert-type items rating their CT propensities; 57 of these individuals also provided examples of CT they experienced in their practice. Factor analysis of CT propensities tentatively suggested four factors: Control, Conflict Avoidance, Directiveness, and Self-Regulation, accounting for 38.5% of response variance. Thematic analysis of CT examples yielded five common triggers: general similarity to patient, medical/genetic similarity, angry patients, patient behaves differently from counselor expectations, and disclosing bad news; six common manifestations: being self-focused, projecting feelings onto the patient, intense emotional reaction to patient, being overly invested, disengagement, and physical reaction; five CT effects: disruption in rapport building, repaired empathy, over-identification, conversation does not reach fullest potential, and counselor is drained emotionally; and three management strategies: recognizing CT as it occurs, self-reflection, and consultation. Results suggest CT is a common experience, occurring in both "routine" and emotionally complex cases. Training programs, continuing education, and peer supervision might include discussion of CT, informed by examples from the present study, to increase genetic counselor awareness and skills for managing the phenomenon.

"If It Helps, It's Worth a Try": an Investigation of Perceptions and Attitudes about Genetic Counseling among Southern Manitoba Hutterites.

Few studies have explored the public's views of genetic counseling services, and even fewer focus on founder populations with high prevalence of genetic disease, such as Hutterites. The Hutterites are an Anabaptist religious group grounded in a strong Christian faith. The primary aim of this study was to assess Hutterites' views of genetic counseling services. A secondary aim was to compare their views to those obtained in a study of rural Midwestern U.S. residents (Riesgraf et al., Journal of Genetic Counseling, 24(4), 565-579, 2015). One-hundred eleven individuals from southern Manitoba Hutterite colonies completed an anonymous survey assessing familiarity with and attitudes about genetic counseling; perceptions of its purpose, scope and practice; and willingness to use genetic counseling services. Although many respondents were not familiar with genetic counseling, most had accurate perceptions and positive attitudes. For instance, mean ratings showed endorsement of trust in information provided by genetic counselors and agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had a higher self-rated familiarity with genetic counseling; were younger; agreed with the statement: I would trust the information provided by a genetic counselor; and disagreed with the statements: Genetic counseling is only useful for a small group of people with rare diseases, and Genetic counselors help expectant parents choose the eye color of their child. Thematic analysis of comments regarding willingness to use genetic counseling services yielded themes of personal/family risk, pragmatism (genetic counseling is sensible and practical for managing health concerns), and desire to prevent genetic conditions in the Hutterite population. Comparison of the present findings to those of Riesgraf et al. suggests predictors of Hutterites' willingness to use genetic counseling are unique and culturally-based. Limited replication of Riesgraf et al. was achieved. Additional findings, practice implications and research recommendations are presented.

Development, Experience, and Expression of Meaning in Genetic Counselors' Lives: an Exploratory Analysis.

Genetic counselors routinely engage with patients and families who grapple with questions of meaning while making decisions about genetic risk. Research and theory demonstrate genetic counselors gain important personal insights through their work and develop professionally from self-reflective practice regarding their beliefs and values. Data are lacking, however, about the nature of the meaning genetic counselors bring to their profession and how they directly experience and/or navigate issues of meaning within clinical practice over time. Accordingly, a national sample (N = 298) of practicing genetic counselors completed a brief survey assessing their demographic characteristics and willingness to participate in a semi-structured telephone interview exploring their views on meaning as they relate to their clinical work and professional development. Sixty-eight individuals of varied experience levels were interviewed about: 1) how they define a meaningful life for themselves; 2) lifetime sources of influence on their sense of meaning; 3) how they experience meaning within both personal and professional contexts; 4) work-related contexts that reaffirm and challenge their sense of meaning; and 5) how their sense of meaning has changed over time. Twenty-five interviews were analyzed using Consensual Qualitative Research methods, at which point, data saturation was reached. Five themes, 32 domains, and 29 categories were extracted. Common findings include: importance of satisfying relationships; helping others; personal fulfillment; personal and patient experiences of illness and loss; religious and/or spiritual foundations; value conflicts; competing obligations; challenges to meaning; development of empathy; resiliency; and increased humility. Results suggest the importance of professional venues for discussions of meaning (e.g., genetic counseling program curricula, continuing education, and peer supervision/consultation). Additional findings, practice implications, and research recommendations are presented.

Portrait of the Master Genetic Counselor Clinician: A Qualitative Investigation of Expertise in Genetic Counseling.

This study comprises an initial empirical description of personal and professional characteristics of master genetic counselors-those considered to be experts in the profession. Fifteen peer-nominated genetic counselors, actively engaged in providing clinical services to patients, participated in semi-structured telephone interviews exploring their personal qualities, inspirations, and perspectives on professional development of expertise. Analysis using modified Consensual Qualitative Research methods yielded 7 domains and 33 categories. Findings indicate master genetic counselors have a strong passion for and dynamic commitment to the profession. They also have insatiable curiosity and are life-long learners who are reflective, self-aware, confident, and recognize their limitations. They are authentic and genuine, and consider their personality to be their counseling style. They form collaborative and interactive relationships with patients based on trust, and they have nuanced attunement to the complexity and multiple levels of the counseling process. Master genetic counselors have deep empathy and are inspired by patients and colleagues, and they derive personal meaning from their work. They are affected emotionally by their work, but effectively manage the emotional impact. They view their professional development as ongoing, influenced by colleagues, patients, mentoring, multicultural considerations, and their own family of origin. They also believe professional development of expertise occurs through critical reflection upon the experiences one accrues. Additional findings and their relationship to theory and research, study strengths and limitations, implication for training and practice, and research recommendation are discussed.

From Novice to Seasoned Practitioner: a Qualitative Investigation of Genetic Counselor Professional Development.

Research on genetic counselor professional development would characterize typical developmental processes, inform training and supervision, and promote life-long development opportunities. To date, however no studies have comprehensively examined this phenomenon. The aims of this study were to investigate the nature of professional development for genetic counselors (processes, influences, and outcomes) and whether professional development varies across experience levels. Thirty-four genetic counselors participated in semi-structured telephone interviews exploring their perspectives on their professional development. Participants were sampled from three levels of post-degree genetic counseling experience: novice (0-5 years), experienced (6-14 years), and seasoned (>15 years). Using modified Consensual Qualitative Research and grounded theory methods, themes, domains, and categories were extracted from the data. The themes reflect genetic counselors' evolving perceptions of their professional development and its relationship to: (a) being a clinician, (b) their professional identity, and (c) the field itself. Across experience levels, prevalent influences on professional development were interpersonal (e.g., experiences with patients, genetic counseling colleagues) and involved professional and personal life events. Common developmental experiences included greater confidence and less anxiety over time, being less information-driven and more emotion-focused with patients, delivering "bad news" to patients remains challenging, and individuals' professional development experiences parallel genetic counseling's development as a field. With a few noteworthy exceptions, professional development was similar across experience levels. A preliminary model of genetic counselor professional development is proposed suggesting development occurs in a non-linear fashion throughout the professional lifespan. Each component of the model mutually influences the others, and there are positive and negative avenues of development.

Genetic Counseling Supervisors' Self-Efficacy for Select Clinical Supervision Competencies.

Supervision is a primary instructional vehicle for genetic counseling student clinical training. Approximately two-thirds of genetic counselors report teaching and education roles, which include supervisory roles. Recently, Eubanks Higgins and colleagues published the first comprehensive list of empirically-derived genetic counseling supervisor competencies. Studies have yet to evaluate whether supervisors possess these competencies and whether their competencies differ as a function of experience. This study investigated three research questions: (1) What are genetic counselor supervisors' perceptions of their capabilities (self-efficacy) for a select group of supervisor competencies?, (2) Are there differences in self-efficacy as a function of their supervision experience or their genetic counseling experience, and 3) What training methods do they use and prefer to develop supervision skills? One-hundred thirty-one genetic counselor supervisors completed an anonymous online survey assessing demographics, self-efficacy (self-perceived capability) for 12 goal setting and 16 feedback competencies (Scale: 0-100), competencies that are personally challenging, and supervision training experiences and preferences (open-ended). A MANOVA revealed significant positive effects of supervision experience but not genetic counseling experience on participants' self-efficacy. Although mean self-efficacy ratings were high (>83.7), participant comments revealed several challenging competencies (e.g., incorporating student's report of feedback from previous supervisors into goal setting, and providing feedback about student behavior rather than personal traits). Commonly preferred supervision training methods included consultation with colleagues, peer discussion, and workshops/seminars.

Effects of Anxiety on Novice Genetic Counseling Students' Experience of Supervised Clinical Rotations.

Supervised clinical experiences with patients comprise a critical component of genetic counseling student education. Previous research has found genetic counseling students tend to be more anxiety prone than the general population, and anxiety related to supervision has been found in genetic counseling and related fields. The present study investigated how anxiety affects the experience of supervision for genetic counseling students. Second year genetic counseling students were invited to participate through email invitations distributed via training directors of the 33 programs accredited at the time of the study by the American Board of Genetic Counseling. An initial online survey contained the trait scale of the State-Trait Anxiety Inventory to estimate anxiety proneness in this population and an invitation to participate in a 45-minute semi-structured phone interview focusing on students' experiences of supervision during their clinical rotations. High and low trait anxiety groups were created using STAI scores, and the groups' interview responses were compared using consensual qualitative research methodology (CQR; Hill 2012). The high anxiety group was more likely to describe problematic supervisory relationships, appreciate the supervisor's ability to help them when they get stuck in sessions, and feel their anxiety had a negative effect on their performance in general and in supervision. Common themes included supervisors' balancing support and guidance, the importance of feedback, ego-centric responses, and supervisors as focal points. The results of the present study are largely consistent with current literature. Further research findings and research, practice, and training recommendations are provided.

Defining Our Clinical Practice: The Identification of Genetic Counseling Outcomes Utilizing the Reciprocal Engagement Model.

The need for evidence-based medicine, including comparative effectiveness studies and patient-centered outcomes research, has become a major healthcare focus. To date, a comprehensive list of genetic counseling outcomes, as espoused by genetic counselors, has not been established and thus, identification of outcomes unique to genetic counseling services has become a priority for the National Society of Genetic Counselors (NSGC). The purpose of this study was to take a critical first step at identifying a more comprehensive list of genetic counseling outcomes. This paper describes the results of a focus group study using the Reciprocal-Engagement Model (REM) as a framework to characterize patient-centered outcomes of genetic counseling clinical practice. Five focus groups were conducted with 27 peer nominated participants who were clinical genetic counselors, genetic counseling program directors, and/or outcomes researchers in genetic counseling. Members of each focus group were asked to identify genetic counseling outcomes for four to five of the 17 goals of the REM. A theory-driven, thematic analysis of focus group data yielded 194 genetic counseling outcomes across the 17 goals. Participants noted some concerns about how genetic counseling outcomes will be measured and evaluated given varying stakeholders and the long-term nature of genetic concerns. The present results provide a list of outcomes for use in future genetic counseling outcomes research and for empirically-supported clinical interventions.

Ethical and Professional Challenges Encountered by Laboratory Genetic Counselors.

Laboratory-based genetic counseling is a growing and yet under researched specialty. In this study, 111 laboratory-based genetic counselors employed in various settings (commercial, academic, etc.) completed an online survey assessing demographics and frequency of encountering 16 domains of ethical and professional challenges encountered by clinical genetic counselors defined previously by McCarthy Veach et al. and validated by Bower et al. Forty-nine of the laboratory genetic counselors also provided anecdotes of particularly challenging situations and strategies for their resolution. Most respondents had less than 5 years' experience as laboratory counselors (71 %), worked full-time (75 %) in industry-based laboratories (91 %) with a focus on molecular diagnostics (84 %), and had limited patient contact (91 %). Similar to clinical counselors, every ethical and professional challenge was endorsed as occurring frequently by some respondents. The most common frequently occurring domains for the sample were: facing uncertainty, time and financial resource allocation, attaining and maintaining proficiency, and informed consent. Content analysis of respondents' anecdotes yielded themes that most commonly concerned: professional identity issues, value conflicts, confidentiality, and colleague error. One unique domain labeled professional communication (educating professionals with limited genetics knowledge), and three salient categories within the professional identity domain--gatekeeping, conflicts of interest, and professional image--were extracted from the anecdotes. The most prevalent strategy for resolving challenging situations was inform health care professional. Results suggest laboratory-based genetic counselors generally face similar ethical and professional challenges as clinical genetic counselors but their exact nature and relative frequency differ. These findings contribute to a greater understanding of common and unique experiences of genetic counselors in different professional specialties.

Clearing the Air: A Qualitative Investigation of Genetic Counselors' Experiences of Counselor-Focused Patient Anger.

Patient anger is challenging for healthcare professionals to manage, particularly when it is directed at them. This study comprises the first in-depth investigation of genetic counselors' experiences with patient anger. Using a brief survey and interview methods, this study explored prevalence and context of patient anger directed at the genetic counselor, how genetic counselors manage patient anger directed at them, and possible thematic differences due to genetic counseling experience. Individuals enrolled in the National Society of Genetic Counselors (NSGC) listserv were invited to participate in a study of their experiences with patient anger directed at them. A majority of survey respondents (95.7 %, 243/254) reported experiencing patient anger directed at them, and 19.4 % reported having feared for their safety because of patient anger. Twenty-two survey respondents were purposively selected to participate in individual interviews. Inductive and cross case analysis yielded prevalent themes concerning patient triggers for anger, including bad news, logistical mishaps, and perceived counselor characteristics. Interview results further suggest unaddressed patient anger negatively affected patient and counselor emotional well-being and hindered genetic counseling goals. Prevalent challenges included genetic counselor attempts to accurately recognize, understand, and effectively manage patient anger without taking it personally. Commonly recommended strategies for addressing anger were empathy (i.e., understanding origins of patient anger), anticipating and acknowledging anger, maintaining personal, professional and legal protection, and debriefing with colleagues. Themes were quite similar across counselor experience levels. The findings underscore the importance of training and continuing education regarding patient anger. Additional findings, practice implications, and research recommendations are presented.

Perceptions and Attitudes About Genetic Counseling Among Residents of a Midwestern Rural Area.

Relatively few investigations of the public's perceptions and attitudes about genetic counseling exist, and most are limited to individuals at-risk for a specific disease. In this study 203 individuals from a Midwest rural area completed an anonymous survey assessing their familiarity with genetic counseling; perceptions of genetic counseling purpose, scope, and practice; attitudes toward genetic counseling/counselors; and willingness to use genetic counseling services. Although very few respondents were familiar with genetic counseling, most reported accurate perceptions and positive attitudes; mean ratings, however, showed less endorsement of trust in information provided by genetic counselors and less agreement that genetic counseling aligns with their values. Logistic regression indicated reported willingness to use genetic counseling services increased if respondents: had completed some college; rated their familiarity with genetic counseling as high; agreed with the statements: genetic counseling may be useful to someone with cancer in their family, genetic counseling is in line with my values, and genetic counselors advise women to get abortions when there is a problem; and disagreed with the statements: genetic counseling is only useful to a small group of people with rare diseases, and genetic counselors must receive a lot of special training. Additional findings, practice implications, and research recommendations are presented.