A Comparison of Telephone Genetic Counseling and In-Person Genetic Counseling from the Genetic Counselor’s Perspective

Growing demand for and limited geographic access to genetic counseling services is increasing the need for alternative service delivery models (SDM) like telephone genetic counseling (TGC). Little research has been done on genetic counselors’ perspectives of the practice of TGC. We created an anonymous online survey to assess whether telephone genetic counselors believed the tasks identified in the ABGC (American Board of Genetic Counseling) Practice Analysis were performed similarly or differently in TGC compared to in person genetic counseling (IPGC). If there were differences noted, we sought to determine the nature of the differences and if additional training might be needed to address them. Eighty eight genetic counselors with experience in TGC completed some or all of the survey. Respondents identified differences in 13 (14.8 %) of the 88 tasks studied. The tasks identified as most different in TGC were: “establishing rapport through verbal and nonverbal interactions” (60.2 %; 50/83 respondents identified the task as different), “recognizing factors affecting the counseling interaction” (47.8 %; 32/67), “assessing client/family emotions, support, etc.” (40.1 %; 27/66) and “educating clients about basic genetic concepts” (35.6 %; 26/73). A slight majority (53.8 %; 35/65) felt additional training was needed to communicate information without visual aids and more effectively perform psychosocial assessments. In summary, although a majority of genetic counseling tasks are performed similarly between TGC and IPGC, TGC counselors recognize that specific training in the TGC model may be needed to address the key differences.     

Women’s Experience of Telehealth Cancer Genetic Counseling

Telegenetics offers an alternative model of delivering genetic counseling to rural and outreach areas; however there is a dearth of qualitative research into the patient’s experience. Twelve women who had received telemedicine genetic counseling for hereditary breast and/or ovarian cancer (HBOC) within the previous 12 months participated in a semi-structured telephone interview. The interview explored women’s experience with telegenetics, satisfaction, perceived advantages and disadvantages and quality of the interaction with their genetic professionals. Overall women were highly satisfied with telegenetics. Telegenetics offered them convenience and reduced travel and associated costs. The majority of women described feeling a high degree of social presence, or rapport, with the off-site genetic clinician. One woman with a recent cancer diagnosis, reported that telemedicine was unable to meet her needs for psychosocial support. This finding highlights the need to be mindful of the psychosocial support needs of women with a recent diagnosis being seen via telegenetics. Patients attending for HBOC genetic counseling are generally highly satisfied with the technology and the interaction. Care should be taken, however, with patients with more complex psychosocial needs.     

Genetic Counseling in the Era of Genomics: What’s all the Fuss about?

As genomic sequencing becomes more widely available in clinical settings for diagnostic purposes, a number of genetic counseling issues are gaining precedence. The ability to manage these issues will be paramount as genetic and non-genetic healthcare professionals navigate the complexities of using genomic technologies to facilitate diagnosis and inform patient management. Counseling issues arising when counseling for diagnostic genomic sequencing were identified by four genetic counselors with 10 years of collective experience providing genetic counseling in this setting. These issues were discussed and refined at a meeting of genetic counselors working in clinical genomics settings in Melbourne, Australia. Emerging counseling issues, or variations of established counseling issues, were identified from the issues raised. Illustrative cases were selected where pre- and post-test genetic counseling was provided in clinical settings to individuals who received singleton or trio WES with targeted analysis. Counseling issues discussed in this paper include a reappraisal of how genetic counselors manage hope in the genomic era, informed consent for secondary use of genomic data, clinical reanalysis of genomic data, unexpected or unsolicited secondary findings, and trio sequencing. The authors seek to contribute to the evolving understanding of genetic counseling for diagnostic genomic sequencing through considering the applicability of existing genetic counseling competencies to managing emerging counseling issues and discussing genetic counseling practice implications.     

An Exploratory Study of Employers’ Attitudes Towards a Clinical Doctorate in Genetic Counseling

Creation of an advanced degree in genetic counseling has been considered since the early 1980s. The Genetic Counseling Advanced Degree Task Force (GCADTF) was convened in 2012 to formally explore the potential suitability of a clinical doctorate (ClinD), though employer perspectives of advanced training were not part of the discussion. The conclusion of this group was that the field was not ready to move to an entry-level clinical doctorate at this time but that further education and research among other stakeholders was necessary (Nagy et al. 2014). In this study, we describe employers’ perspectives on developing a clinical doctorate in genetic counseling based upon thirty audio-recorded semi-structured phone interviews that were transcribed verbatim and qualitatively analyzed. Overall, employers expressed concerns regarding the economic viability of ClinD training but envisioned expanded roles for genetic counselors (especially in areas of education and research) and enhanced credibility. While some employers reported that they would provide flexibility and tuition assistance for acquisition of a ClinD, for many employers, support was contingent on perceived value of the degree. Some employers were not clear about the difference between a ClinD and a PhD, suggesting that there is a need for educating employers about advanced degree options for the genetic counseling field. Future research could include investigating employer attitudes about market needs, envisioned roles, and compensation formulas for counselors with a ClinD or other forms of advanced training.     

Parkinson’s Disease: Patients’ Knowledge,Attitudes, and Interest in Genetic Counseling

The objective of this study was to assess the genetics knowledge of patients with Parkinson’s disease (PD), and to explore their attitudes on genetic testing and interest in genetic counseling. We surveyed 158 patients from the University of Maryland Parkinson’s Disease and Movement Disorders Center. Patients averaged a score of 63% on general genetics knowledge and 73% on PD genetics knowledge. Participants had an overall positive attitude toward genetic testing: 80% believed that the use of genetic tests among people should be promoted, and 83% would undertake genetic test for PD if it was available. Patients reported a high interest to discuss the benefits, risks, and impacts of genetic testing for PD (mean sum score?=?26, range?=?9–35), and 43% patients expressed interest in meeting with a genetic counselor. Multivariate regression analysis showed that patients who had more positive attitudes toward genetic testing for PD were more interested in meeting with a genetic counselor (β?=?0.6, p?<?0.001). This study is the first to demonstrate an interest in genetic counseling among patients with PD. Our findings demonstrate a new niche for genetic counselors to support patients in clarifying gaps or misconceptions in knowledge about PD genetics as well as the possible risks, benefits, and limitations of genetic testing.     

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.     

It’s in your nature: a pluralistic folk psychology

I suggest a pluralistic account of folk psychology according to which not all predictions or explanations rely on the attribution of mental states, and not all intentional actions are explained by mental states. This view of folk psychology is supported by research in developmental and social psychology. It is well known that people use personality traits to predict behavior. I argue that trait attribution is not shorthand for mental state attributions, since traits are not identical to beliefs or desires, and an understanding of belief or desire is not necessary for using trait attributions. In addition, we sometimes predict and explain behavior through appeal to personality traits that the target wouldn’t endorse, and so could not serve as the target’s reasons. I conclude by suggesting that our folk psychology includes the notion that some behavior is explained by personality traits—who the person is—rather than by beliefs and desires—what the person thinks. Consequences of this view for the debate between simulation theory and theory theory, as well as the debate on chimpanzee theory of mind are discussed.     

A New Definition of Genetic Counseling: National Society of Genetic Counselors’ Task Force Report

The Genetic Counseling Definition Task Force of the National Society of Genetic Counselors (NSGC) developed the following definition of genetic counseling that was approved by the NSGC Board of Directors: Genetic counseling is the process of helping people understand and adapt to the medical, psychological and familial implications of genetic contributions to disease. This process integrates the following: •Interpretation of family and medical histories to assess the chance of disease occurrence or recurrence. •Education about inheritance, testing, management, prevention, resources and research. •Counseling to promote informed choices and adaptation to the risk or condition. The definition was approved after a peer review process with input from the NSGC membership, genetic professional organizations, the NSGC legal counsel, and leaders of several national genetic advocacy groups.     

Carrying the Burden: Counselors of Color’s Experiences of Microaggressions in Counseling

In this secondary analysis using a previous dataset, the authors explored, via a phenomenological research tradition, how 8 counselors of color responded to clients’ microaggressive behaviors. Researchers identified 3 major themes in the data: (a) buffering and bracing for racial microaggressions, (b) experiencing the intrusions of racial microaggressions, and (c) strategizing and responding in session. The authors apply the Multicultural and Social Justice Counseling Competencies (Ratts, Singh, Nassar-McMillan, Butler, & McCullough, 2015) to their findings as a framework for considering practice and training implications.     

“It’s Scary but It’s Also Exciting”: Evidence of Meta-Affective Learning in Science

We study the case of Marya, a freshman engineering major who showed and spoke of a drastic shift in her feelings and approach to learning physics during an introductory course. For the first several weeks, she was anxiously manipulating equations without considering physical meaning, and she was terribly worried about being correct. By the end of the semester, however, she was sense-making and taking pleasure in it, showing and expressing an enjoyment of challenges and uncertainty. In this paper, we illustrate Marya’s transformation using data from her interview and coursework, and we propose it as an example of meta-affective learning. We argue that meta-affective learning was an important part of Marya’s physics learning and that it was deeply entangled with her developing epistemology.     

Midwives’ Approach to Genetic Diseases and Genetic Counseling in Denizli, Turkey

The purpose of this study was to evaluate Denizli midwives’ self-reported knowledge of genetic diseases and genetic counseling. Data was collected on forms that obtained information about midwives approaches to basic genetics, genetic disorders, and genetic counseling (response rate = 70.1%). The highest response rate of midwives describing themselves as “knowledgeable” about basic genetic information was for mitosis and meiosis with 4.8%, about genetic disorders was for phenylketonuria with 61.1%, and about genetic counseling was for recommending ultrasonography during pregnancy with 98.1%. The source for basic genetics information for 56.4% of participants was in their school level classes. None of the midwives felt that they had sufficient knowledge about genetic counseling or screening and 76.4% would like to attend an educational course. Even though the midwives have recognized their knowledge deficit they occasionally give genetic counseling. As a result of this study a genetics course is planned for midwives so they can actively participate in the prevention and early diagnosis of genetic diseases.     

Spirituality in Counseling: What Do Counseling Students Think About It?

The author discusses students' reactions to 4 seminars. 1‐hour each, on the topic of spirituality in counseling. Students were enrolled in a master's‐level counseling program, Several issues emerged that have implications for the training of counselors on spiritual issues, including students' level of comfort with discussing spiritual issues, the difficulty of defining spirituality, client and counselor readiness to explore spirituality, and training issues in the area of spirituality.     

It’s Not You,It’s Me: An Exploration of Mentoring Experiences for Women in STEM

Although the number of women in science, technology, engineering and mathematics (STEM) continues to grow, men still represent a significant majority of those employed in these industries. Mentoring programs have been identified as a useful tool to alleviate this gap and therefore have been developed in an effort to attract and retain women in STEM. However, research suggests that women are still being mentored less often than their male colleagues. To understand this issue in depth, 36 women holding managerial positions in STEM organizations in the United States and Canada were interviewed and their experiences with mentoring were discussed. The results suggest that women do have access and indeed find potential mentors but they perceive significant barriers that prevent these initial meetings from developing into long-term mentoring relationships. Specifically, four Barriers to the Development of Mentorship (BDM) were identified including: Need for Fit, Demonstrating Capability, Commitment of the Mentor, and Trust in the Mentor. BDM might help researchers and practitioners understand why women are under-mentored and consequently underrepresented in STEM workplaces. Implications of these findings are discussed, such as how to improve formal mentoring programs to overcome BDM and better serve women in STEM.

     

The Road Less Traveled: One Genetic Counselor’s Reflections on Disability and the Genetic Counseling Profession

Reflections on disability and the genetic counseling profession from the perspective of a seasoned genetic counselor who is also the mom of a child with a disability.