Browsing by Subject "Genetic counselors"

Now showing 1 - 3 of 3
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    An exploration of delegation practices regarding the utilization of genetic counseling assistants for disclosure of genetic testing results
    (Wiley, 2025) Ranson, David; Allison, Camille O.; Wetherill, Leah; Delk, Paula R.; Stone, Kristyne; Medical and Molecular Genetics, School of Medicine
    Genetic counselors (GCs) play a crucial role in the healthcare system, providing education, support and guidance regarding genetic risk assessment, testing and results interpretation. To help GCs practice at the highest level of their expertise, the role of the genetic counseling assistant (GCA) was introduced, focusing on tasks like administrative support and patient care coordination. Although GCs typically handle the disclosure of test results, there is limited research on the delegation of results disclosure to GCAs. This study explores GCs' perspectives on delegating negative and variant of uncertain significance (VUS) genetic test results disclosures to GCAs. A quantitative survey was conducted among GCs practicing in the United States and Canada. Results revealed that while the majority of GCs were willing to delegate both negative and VUS results, few currently do so. Oncology GCs exhibited greater willingness and actual delegation of VUS disclosures relative to other specialties. Effective communication skills, level of genetics knowledge, and willingness to seek help were identified as the most influential attributes on GCs' confidence in GCAs' abilities to disclose test results. The most frequent concern about GCAs disclosing negative and VUS results was remaining suspicion for an underlying genetic etiology. Additionally, GCs were concerned about delegating VUS disclosures since patients more frequently struggle to understand those results. A triaging system to determine suitable results for a GCA to disclose and extensive shadowing of GCs disclosing results were proposed as methods of building GCs' confidence in the ability of a GCA to disclose test results. Ultimately, a better understanding of the discrepancy between GCs' willingness to delegate results disclosures and actual delegation practices is essential if the GCA scope of practice were to include results disclosure.
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    An investigation of preceptors' perceptions of behavioral elements of "professionalism" among genetic counseling students
    (Wiley, 2023) Delk, Paula; Bowling, Isabella; Schroeder, Courtney; Wilson, Theodore E.; Wesson, Melissa; Wetherill, Leah; Medical and Molecular Genetics, School of Medicine
    Professionalism in health care is a loosely defined but increasingly studied concept. In genetic counseling, "professional development" expectations for entry-level genetic counselors are described in the "Practice-Based Competencies for Genetic Counselors," but the teaching and evaluation of "professionalism" among genetic counseling students is relatively unexplored. This study investigated program leaders' and clinical supervisors' perceptions of professionalism demonstrated by genetic counseling graduate students to learn about their associated strengths and lapses. Members of program leadership and clinical supervisors at Accreditation Council for Genetic Counseling (ACGC) accredited genetic counseling graduate programs in the United States and Canada were surveyed regarding their observations of genetic counseling students for the years 2017-2019 regarding four domains of professional behavior: integrity, accountability/conscientiousness, teamwork, and patient care, with the Merriam-Webster definition of each behavior provided for each domain. Participants also provided open-text descriptions. Descriptive results showed that the 263 participants found all facets of these professional behaviors to be essential. Patient care had the highest importance and was the domain with the most strengths observed among genetic counseling students. Lapses in professional behavior were identified for self-awareness, time management, and thoroughness. Free responses noted that suggestions or strategies for education about professional behavior from ACGC may improve the professional behavior of genetic counseling students and in turn, genetic counselors. Participants voiced the importance of consideration of diverse professional and cultural backgrounds in setting the expectations for professional behavior among genetic counseling students and genetic counselors so that "professionalism" in genetic counseling is not defined through a White lens. Further investigation into challenges that genetic counseling students face regarding professional behavior during their graduate training and strategies for education about these behaviors will aid in the growth and improvement of the training of genetic counselors. Given the sensitive nature of this topic, portions of this discussion may be triggering for some readers.
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    Effects of hypermobile Ehlers‐Danlos syndrome patients on the workflow and professional satisfaction of genetic counselors
    (Wiley, 2024) Eckstein, Lauren; Helm, Benjamin M.; Baud, Rebecca; Francomano, Clair A.; Halverson, Colin; Medical and Molecular Genetics, School of Medicine
    The Ehlers-Danlos syndromes (EDS), a group of uncommon connective tissue disorders, are, paradoxically, an increasingly common referral to genetics specialists. Of the 13 types of EDS, the most common is hypermobile EDS (hEDS), which lacks a known genetic etiology and for which diagnosis is achieved via a robust set of clinical criteria. While previous investigations have characterized many clinical aspects of EDS as a syndrome and patients' lived experiences, a gap in the literature exists regarding clinicians' experience caring for these individuals. This study sought to understand the effects of hEDS patient referrals from genetic counselors' perspectives. To capture these novel views and values, we conducted semi-structured interviews with 15 participants who were members of the National Society of Genetic Counselors (NSGC) and had experience working with the hEDS patient population. Interview questions explored the frequency of hEDS referrals in their clinic, investigated their roles and responsibilities as genetic counselors when working with this population, analyzed their workflow for this indication, assessed the impacts on their professional satisfaction, and explored potential options for improving workflow and care for the hEDS patient population. Reflexive thematic analysis yielded four themes: (1) Referrals for hEDS have generally increased over time and many institutions have implemented new policies to control this influx, (2) genetic counselors' primary roles include education and addressing psychosocial matters for this population, (3) genetic counselors feel both rewarded and challenged by these referrals, and (4) genetic counselors call for more education and training on hEDS for all healthcare specialties. Our findings provide a better understanding of the goals of the hEDS patient referrals to genetics specialists and the opportunities and challenges those referrals present. Genetic counselors have specific training and skills in psychosocial counseling and communication, in some ways making them ideal care providers for this population. However, they are simultaneously a scarce resource and the complex medical issues presented by many patients with hEDS make multidisciplinary management essential. We conclude with potential avenues for improving interactions with this population.