Genetic counselor training for the next generation: Where do we go from here?

Riconda, Daniel; Grubs, Robin E.; Campion, MaryAnn; Cragun, Deborah

doi:10.1002/ajmg.c.31598

Cited by 26 publications

(31 citation statements)

References 40 publications

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“…22,32 Further, concerns exist regarding the disproportionate need for genetic counselors relative to supply. [40][41][42] Finally, respondents suggested that external guidelines and evidence-based norms within the field of psychiatric genetics must be supported by greater funding for RoR. One respondent poignantly observed that the lack of funding opportunities reflects an overall lack of recognition of the value of returning results responsibly to participants, as well as of mitigating the potential extra burdens RoR can place on researchers, staff, and clinicians who serve dual roles as both interpreters of genetic research results and clinical caregivers.…”

Section: Discussionmentioning

confidence: 99%

Psychiatric genomics researchers’ perspectives on best practices for returning results to individual participants

Kostick

Pereira

Brannan

et al. 2020

Genetics in Medicine

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Purpose: Large-scale array-based and sequencing studies have advanced our understanding of the genetic architecture of psychiatric disorders, but also increased the potential to generate an exponentially larger amount of clinically relevant findings. As genomic testing becomes more widespread in psychiatry research, urgency grows to establish best practices for offering return of results (RoR) to individuals at risk or diagnosed with a psychiatric disorder. Methods:We interviewed an international sample (n = 39) of psychiatric genetics researchers to examine conceptualizations of "best practices" for RoR to individual research participants.Results: While the vast majority of researchers do not offer RoR, most believed medically actionable findings (85%) and clinically valid but non-medically actionable findings (54%) should be offered. Researchers identified three main areas for improvement: interfacing with individual participants; interdisciplinary training, guidance, and integration; and quality planning and resource allocation for returning results.Conclusion: There are significant gaps between researchers' visions for "best" versus "actual" RoR practices. While researchers call for participant-centered practices, including consent practices that consider any special needs of participants with psychiatric disorders, return of individually meaningful results, and effective follow-up and provisions for treatment, the current reality is that consent and RoR practices lack standardized and evidencebased norms. (2020) 22:345-352; https://doi. Genetics in Medicine

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Section: Discussionmentioning

confidence: 99%

Psychiatric genomics researchers’ perspectives on best practices for returning results to individual participants

Kostick

Pereira

Brannan

et al. 2020

Genetics in Medicine

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“…In the United States, it is estimated that one per 100 000 genetic counselors is needed to adequately serve the population. 25 In our province, there are approximately one per 300 000-400 000 genetic counselors specifically working in the hereditary cancer field. Parallel increases in the workforce size as well as moves toward alternate service delivery models in genetic counseling 26 will be needed to meet the increasing demand brought by universal screening.…”

Section: Discussionmentioning

confidence: 99%

Evaluating the impact of universal Lynch syndrome screening in a publicly funded healthcare system

et al. 2020

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Purpose Referrals for Lynch syndrome (LS) assessment have traditionally been based on personal and family medical history. The introduction of universal screening practices has allowed for referrals based on immunohistochemistry tests for mismatch repair (MMR) protein expression. This study aims to characterize the effect of universal screening in a publicly funded healthcare system with comparison to patients referred by traditional criteria, from January 2012 to March 2017. Methods Patient files from the time of initiation of universal screening from 2012 to 2017 were reviewed. Patients were sorted into two groups: (a) universally screened and (b) referred by traditional methods. Mutation detection rates, analysis of traditional testing criteria met, and cascade carrier testing were evaluated. Results The mutation detection rate of the universal screening group was higher than the traditionally referred group (45/228 (19.7%) vs 50/390 (12.5%), P = .05), though each were able to identify unique patients. An analysis of testing criteria met by each patient showed that half of referred patients from the universal screening group could not meet any traditional testing criteria. Conclusion The implementation of universal screening in a publicly funded system will increase efficiency in detecting patients with LS. The resources available for genetic testing and counseling may be more limited in public systems, thus inclusion of secondary screening with BRAF and MLH1 promoter hypermethylation testing is key to further optimizing efficiency.

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“…3 There are currently just over 450 clinical training positions within 49 genetic counseling master's degree training programs in North America approved by the Accreditation Council for Genetic Counseling. 4,5 Less than half of the US training programs are located within a school of medicine, whereas all four Canadian training programs are located within a school of medicine. 4 However, integration with other health care professionals in training, specifically, medical students, is not standard in all genetic counseling training programs, and therefore, physicians are often unaware of the opportunity for interprofessional collaboration.…”

Section: Introductionmentioning

confidence: 99%

Complexities of Clinical Genetics Consultation: An Interprofessional Clinical Skills Workshop

Hoffman

Thompson

et al. 2020

MedEdPORTAL

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Introduction: Advances in genomic medicine contribute to increased demand for clinical genetics services and require physicians to understand the interprofessional practice of this field. Medical students receive a foundation in genetics during preclinical studies, but variability in clinical experience may limit knowledge of and recruitment into this clinical specialty. In this resource, we describe an approach for simulating exposure to the practice of clinical genetics during the core pediatrics clerkship. Methods: Prior to class, students researched and considered a mock genetics case. In class, each of four small groups discussed two cases demonstrating varied presentations, with facilitation by genetic counseling students. Each case highlighted the variability in presentation, testing, management strategies, and psychosocial issues of a genetics case. Groups reported out to the class, and individuals completed an anonymous evaluation survey. Results: Surveys were distributed to nine of 10 pilot sessions (210 of 235 students) with a response rate of 48%. Students frequently reported no previous exposure to seeing patients with genetics professionals, indicated a preference for learning in case discussion format over traditional lectures, and felt the format helped them apply clinical skills and reasoning. Medical students appreciated the opportunity to interact with genetic counseling students in an interdisciplinary setting and desired further educational opportunities regarding delivering complex information to patients and their families. Discussion: This session expanded exposure to clinical genetics content and professionals, serving as an important foundation for further development of genetic knowledge during clinical training.

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Genetic counselor training for the next generation: Where do we go from here?

Cited by 26 publications

References 40 publications

Psychiatric genomics researchers’ perspectives on best practices for returning results to individual participants

Psychiatric genomics researchers’ perspectives on best practices for returning results to individual participants

Evaluating the impact of universal Lynch syndrome screening in a publicly funded healthcare system

Complexities of Clinical Genetics Consultation: An Interprofessional Clinical Skills Workshop

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