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

PURPOSE To assess preferences for the content and process of genetic counseling and testing for breast-ovarian cancer susceptibility among women at high risk for breast cancer. METHODS Ninety-eight healthy women who had a family history of breast cancer in at least two first-degree relatives participated in a structured telephone survey that evaluated preferences for type of provider and the content and process of pretest education and posttest genetic counseling. RESULTS Forty-two percent of women preferred that pretest education be delivered by a genetic counselor, while 22% preferred an oncologist. This preference was positively associated with a desire to discuss psychosocial issues during the session (P = .001). For posttest counseling, 38% of women preferred an oncologist, while 20% preferred a genetic counselor. However, women who desired supportive counseling during this session were significantly more likely to prefer a genetic counselor to an oncologist (P = .02). Fewer women wished to see a primary care physician or gynecologist for pretest education (11%) or posttest counseling (22%). With regard to the counseling process, 82% of women wished to self-refer for genetic counseling, but 63% desired advice and recommendations about whether to be tested. CONCLUSION When feasible, the optimal approach may be for oncologists to work with genetic counselors to provide pretest education and medical recommendations. Elicitation of patients' preferences may be useful to determine the level of counseling services needed.

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

Journal of Genetic Counseling ◽

10.1007/s10897-015-9900-2 ◽

2015 ◽

Vol 25 (4) ◽

pp. 818-834 ◽

Cited By ~ 18

Author(s):

Kimberly Wehner Zahm ◽

Patricia McCarthy Veach ◽

Meredith A. Martyr ◽

Bonnie S. LeRoy

Keyword(s):

Professional Development ◽

Genetic Counselor ◽

Qualitative Investigation ◽

Genetic Counselor Professional Development

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Qualitative investigation of the factors that generate ambivalent feelings in women who give birth after receiving negative results from non-invasive prenatal testing

10.21203/rs.2.12626/v4 ◽

2020 ◽

Author(s):

Junko Yotsumoto ◽

Akihiko Sekizawa ◽

Satomi Inoue ◽

Nobuhiro Suzumori ◽

Osamu Samura ◽

...

Keyword(s):

Genetic Counseling ◽

Pregnant Women ◽

Qualitative Data ◽

Prenatal Testing ◽

Qualitative Investigation ◽

Anticipatory Anxiety ◽

Related Factors ◽

Non Invasive ◽

Negative Results

Abstract Background: Women who receive negative results from non-invasive prenatal genetic testing (NIPT) may find that they later have mixed or ambivalent feelings, for example, feelings of accepting NIPT and regretting undergoing the test. This study aimed to investigate the factors generating ambivalent feelings among women who gave birth after having received negative results from NIPT. Methods: A questionnaire was sent to women who received a negative NIPT result, and a contents analysis was conducted focusing on ambivalent expressions for those 1562 women who responded the questionnaire. The qualitative data gathered from the questionnaire were analyzed using the N-Vivo software package. Results: Environmental factors, genetic counseling-related factors, and increased anticipatory anxiety, affected the feeling of ambivalence among pregnant women. Furthermore, pregnant women desired more information regarding the detailed prognosis for individuals with Down syndrome and living with them and/or termination, assuming the possibility that they were positive. Conclusions: Three major interrelated factors affected the feeling of ambivalence in women. High-lighting and discussing such factors during genetic counseling may resolve some of these ambivalences, thereby enhancing the quality of decisions made by pregnant women.

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The Laboratory Genetic Counselor as an Educator

10.1093/med/9780190604929.003.0014 ◽

2017 ◽

Author(s):

Eric Rosenthal ◽

April L. Studinski Jones

Keyword(s):

Genetic Counseling ◽

Genetic Testing ◽

Medical Students ◽

Graduate Students ◽

Educational Program ◽

Genetic Counselor ◽

Genetic Counselors ◽

Educational Resource ◽

Testing Laboratory ◽

Laboratory Staff

The laboratory genetic counselor is commonly called upon to serve as an educational resource within the genetic testing laboratory. This chapter outlines this unique genetic counseling role. Laboratory genetic counselors provide education about genetic testing and genetic concepts within the laboratory to existing laboratory staff, new laboratory genetic counselor colleagues, formal educational program participants (genetic counselor interns, graduate students, medical students and residents, and laboratory fellows), and laboratory colleagues. They also use their skills and knowledge to educate client laboratories and clinicians. They may also participate in public and community forums.

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Genetic Counselor Role in Sales and Marketing

10.1093/med/9780190604929.003.0011 ◽

2017 ◽

Author(s):

Colleen Landy Schmitt ◽

Gabriel A. Lazarin

Keyword(s):

Genetic Counseling ◽

Genetic Testing ◽

Communication Skills ◽

Genetic Counselor ◽

Genetic Counselors ◽

Counseling Training ◽

Testing Laboratories ◽

Genetic Counseling Training ◽

Sales And Marketing ◽

Counselor Role

Sales and marketing functions may be a good fit for laboratory genetic counselors. Genetic counselors can use the technical and communication skills they learned during genetic counseling training to perform roles in marketing and sales and as medical liaisons for genetic testing laboratories. This chapter describes how genetic counselors in sales roles use their genetic counseling background. It discusses the challenges and limitations of such roles. Resources for thriving in sales and marketing roles are provided.

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Successful integration of genetic counseling in a comprehensive childhood cancer survivorship clinic.

Journal of Clinical Oncology ◽

10.1200/jco.2017.35.5_suppl.230 ◽

2017 ◽

Vol 35 (5_suppl) ◽

pp. 230-230

Author(s):

Shafqat Shah ◽

Gregory John Aune ◽

Lindsey Mette ◽

Natalie Poullard

Keyword(s):

Genetic Counseling ◽

Genetic Testing ◽

Family History ◽

Childhood Cancer ◽

Cancer Survivorship ◽

Chart Review ◽

Genetic Counselor ◽

Pilot Project ◽

Cancer Predisposition ◽

Childhood Cancer Survivorship

230 Background: Awareness of inherited genetic risk and cancer predisposition has markedly increased. Research has shown that germline mutations in known cancer predisposition genes are identified in ~8% of pediatric oncology patients. Patients diagnosed years ago did not meet with a Genetic counselor or undergo genetic testing. The annual comprehensive survivorship visit provides cancer survivors an opportunity to review personal and family history and receive Genetic counseling. Methods: Our group initiated a pilot project in our Childhood Cancer Survivorship clinic (CCSC) to assess the feasibility of introducing survivors to a Certified Genetic Counselor (CGC). Initially, a chart review of annual visits that took place over a 3-month period was performed. A record of documentation of family history and genetic counseling was made. During the pilot period, survivors and their families were given the option to meet with a CGC. The CGC prepared a pedigree and made specific written recommendations regarding the indication, if any, for genetic testing in the patient or family. Anonymous post-counseling surveys were mailed to the families to gauge their satisfaction. Results: Prior to the pilot, 38 survivors were seen for annual visits over a 3 month period. Chart review identified no formal genetic counseling. A note of a family history of cancer was made in 1 patient. During the 3 month implementation period, 50 survivors were seen for annual visits. Thirty-four ( ~70%) accepted the offer to see a CGC. Of the 16 that did not meet with a CGC, 3 had significant medical issues that required attention, 2 had Down syndrome and 2 had previous genetic counseling. The rest declined interest with no specific rationale. Very few (3) surveys were returned. All rated the experience highly. Conclusions: Our experience in a multi-disciplinary CCSC supports the feasibility of delivering CGC services to long-term survivors of cancer. A majority of survivors were interested in meeting with the CGC. Further development of this program will focus on educating survivors about cancer predisposition and increasing access to CGC services.

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A randomized controlled trial of video-education or in-person genetic counseling for men with prostate cancer (ProGen).

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.1507 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. 1507-1507

Author(s):

Huma Q. Rana ◽

Jill E. Stopfer ◽

Nancie Petrucelli ◽

Diane R. Koeller ◽

Sara Pirzadeh-Miller ◽

...

Keyword(s):

Prostate Cancer ◽

Genetic Counseling ◽

Informed Consent ◽

Controlled Trial ◽

Genetic Counselor ◽

Local Therapy ◽

Cancer Surveillance ◽

Cancer Susceptibility Genes ◽

Video Education ◽

Time Of Intervention

1507 Background: Approximately 10% of men with advanced prostate cancer (PC) have pathogenic/likely pathogenic variants (PV) in cancer susceptibility genes and their identification may lead to targeted therapy. Genetic testing (GT) can also guide cancer surveillance and prevention for family members. While GT is recommended for men with potentially lethal PC, traditional testing models are strained, and access limited. The ProGen study examined a novel pretest model aimed at providing access to GT while promoting informed consent. Methods: Inclusion criteria were: potentially lethal PC (metastatic, localized with Gleason score ≥8, rising/persistent PSA after local therapy), diagnosis age ≤ 55 years, prior malignancy, family history suggestive of a PV and/or at oncologist’s discretion. Consented subjects from 3 sites were randomized 3:1 to video education (VE) or in-person genetic counseling (GC). Subjects who consented to GT had 67 genes analyzed (Ambry, USA) with results disclosed by telephone by a genetic counselor. Outcomes included GT uptake, PV prevalence, and survey measures of satisfaction, distress, genetics knowledge, family communication, and impact on cancer care (obtained at the time of intervention, and at 1, 4, and 12 months after result disclosure). Two-sided Fischer exact tests were used for between-arm comparisons. Results: Over a 2-year period: 662 subjects were randomized, VE or GC were completed by 604 subjects (VE: 93.1%, GC: 88.8%) of whom 596 subjects (VE:98.9%, GC:97.9%) consented to GT. To date, 591 subjects have completed GT (VE: 99.3%, GC: 98.6%). At the time of intervention, most subjects agreed or strongly agreed that their assigned arm was useful (VE: 95%, GC: 88%). Differences were not statistically significant. Notably, 84 PV were identified in 78 subjects (13.2%), with BRCA1/2 PV accounting for 32% of subjects with a positive result ( BRCA2:21, BRCA1:4). Conclusions: In this randomized trial, both novel VE and traditional GC yielded high GT uptake without significant differences in outcome measures of acceptability and satisfaction. VE enabled access to critical GT results while maintaining the core tenants of informed consent. PV were found in 13.2% of subjects, 32% of whom had BRCA1/2 PV. Analysis of collected survey data to inform strengths and limitations of VE as compared with pretest GC will be presented. Clinical trial information: NCT03328091.

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Partnership with an independent genetic counselor and standardized screening: Effect on the identification, referral, and genetic testing of eligible patients in a community oncology clinic.

Journal of Clinical Oncology ◽

10.1200/jco.2019.37.27_suppl.138 ◽

2019 ◽

Vol 37 (27_suppl) ◽

pp. 138-138

Author(s):

Larry Edward Bilbrey ◽

Natalie R. Dickson ◽

Smita K Rao ◽

Gregg Christian Shepard ◽

Kathy McGee ◽

...

Keyword(s):

Genetic Counseling ◽

Genetic Testing ◽

Genetic Counselor ◽

Pathogenic Mutation ◽

Baseline Data ◽

Community Practice ◽

Nccn Guidelines ◽

Community Oncology ◽

Automated Screening

138 Background: A nine provider, community oncology clinic had limited local access to genetic counseling. Additionally, the practice had no process for identifying appropriate patients for genetic counseling or testing and no method to track referrals and test results. The practice partnered with a contracted genetic counselor and a study was completed to standardize screening and follow-up and to increase referrals and testing. Methods: Baseline data on genetic testing performed in 2018 was obtained from three major genetic testing labs. Based on the NCCN guidelines for genetic assessment, the practice created automated screening reports from the EMR, supplemented by manual chart review, to identify appropriate patients for genetic counseling. Front office, clinical and billing workflows were created. Patients were scheduled to see the counselor via in-person appointments or remotely via a HIPAA compliant telemedicine platform. The genetic counseling sessions included education and consent for testing followed by review and discussion of results. Consultations and genetic testing results were documented in the practice’s EMR. Results: Baseline data showed that the clinic tested 7 patients in 2018; 2 patients in the first quarter. During the pilot from Jan-Mar 2019, 34 patients were referred for genetic counseling; 30 consented to testing. This is a 329% increase over 2018; 1400% for the first quarter. Of the 30 patients tested during the pilot, 6 were positive for a pathogenic mutation. Conclusions: By contracting with a genetic counselor, and establishing procedures for screening, counseling, consenting, testing and follow-up, the practice was able to increase the number of appropriate genetic testing considerably. This process will be scaled to multiple sites of a community practice.

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Next-Generation Service Delivery: A Scoping Review of Patient Outcomes Associated with Alternative Models of Genetic Counseling and Genetic Testing for Hereditary Cancer

Cancers ◽

10.3390/cancers10110435 ◽

2018 ◽

Vol 10 (11) ◽

pp. 435 ◽

Cited By ~ 26

Author(s):

Jeanna McCuaig ◽

Susan Armel ◽

Melanie Care ◽

Alexandra Volenik ◽

Raymond Kim ◽

...

Keyword(s):

Genetic Counseling ◽

Genetic Testing ◽

Service Delivery ◽

Patient Outcomes ◽

Scoping Review ◽

Hereditary Cancer ◽

Genetic Counselor ◽

Alternative Models ◽

Counseling And Testing ◽

Study Team

The combination of increased referral for genetic testing and the current shortage of genetic counselors has necessitated the development and implementation of alternative models of genetic counseling and testing for hereditary cancer assessment. The purpose of this scoping review is to provide an overview of the patient outcomes that are associated with alternative models of genetic testing and genetic counseling for hereditary cancer, including germline-only and tumor testing models. Seven databases were searched, selecting studies that were: (1) full-text articles published ≥2007 or conference abstracts published ≥2015, and (2) assessing patient outcomes of an alternative model of genetic counseling or testing. A total of 79 publications were included for review and synthesis. Data-charting was completed using a data-charting form that was developed by the study team for this review. Seven alternative models were identified, including four models that involved a genetic counselor: telephone, telegenic, group, and embedded genetic counseling models; and three models that did not: mainstreaming, direct, and tumor-first genetic testing models. Overall, these models may be an acceptable alternative to traditional models on knowledge, patient satisfaction, psychosocial measures, and the uptake of genetic testing; however, particular populations may be better served by traditional in-person genetic counseling. As precision medicine initiatives continue to advance, institutions should consider the implementation of new models of genetic service delivery, utilizing a model that will best serve the needs of their unique patient populations.

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