The measure of freedom the subject-addressee of genetic education: the content of genetic education

The article is devoted to the issue of the measure of freedom of the subject-addressee of genetic education. The goal of this article is to clarify and analyze the features of content of genetic education; to compare the notion of genetic education with legal and medical education and find similarities and differences between them; to reflect on ways and methods of legal and social regulation of genetic education.The study considers two theoretical models of understanding of the measure of freedom related to the use of information on genetic data. The first model deals with genetic information that must be provided. The second model pertains to optional information.The notion of “genomic education” is analyzed in the context of characteristics of genetic education and is compared with medical and legal education. It is highlighted that genetic education is inherently innovative, interdisciplinary, narrow-focused, limited in its content, and proactive.In conclusion, it is emphasized that there is a need to conduct a further research on content, control and communication in the implementation of narrow-focused genetic education.

Pretest Genetic Education Video Versus Genetic Counseling for Men Considering Prostate Cancer Germline Testing: A Patient-Choice Study to Address Urgent Practice Needs

PURPOSE Germline testing (GT) for prostate cancer (PCA) is now central to treatment and hereditary cancer assessment. With rising demand for and shortage of genetic counseling (GC), tools to deliver pretest informed consent across practice settings are needed to improve access to GT and precision care. Here, we report on Evaluation and Management for Prostate Oncology, Wellness, and Risk (EMPOWER), a patient-choice study for pretest video-based genetic education (VBGE) versus GC to inform urgent practice needs. PATIENTS AND METHODS Men with PCA or at risk for PCA (family history of PCA) were eligible and could choose pretest VBGE or GC. Outcomes included decisional conflict for GT, change in genetics knowledge, satisfaction, and intention to share results with family and/or providers. Descriptive statistics summarized results with counts and percentages for categorical variables and mean ± standard deviation for continuous variables. Data were compared with Fisher's exact, chi-squared, or Wilcoxon two-sample tests. Mean change in genetics knowledge was compared with t tests. The significance level was set a priori at .05. RESULTS Data on the first 127 participants were analyzed. Characteristics were White (85.8%), bachelor's degree (66.9%), and PCA diagnosis (90.6%). The majority chose VBGE (71%) versus GC (29%; P < .001). No differences were observed in decisional conflict for GT or satisfaction. Cancer genetics knowledge improved in both groups without significant difference (+0.9 VBGE, +1.8 GC, P = .056). Men who chose VBGE had higher intention to share GT results (96.4% VBGE v 86.4% GC, P = .02). Both groups had high rates of GT uptake (VBGE 94.4%, GC 92%). CONCLUSION A substantial proportion of men opted for pretest VBGE, with comparable patient-reported outcomes and uptake of GT. The results support the use of pretest video to address the critical GC shortage in the precision era.

Point of care genetic testing in a breast cancer survivorship clinic.

10580 Background:: Breast cancer survivorship care (BCSC) includes the ongoing assessment of personal and family cancer history and offering genetic education, counseling and testing to survivors who meet NCCN, ASBrS and Medicare guidelines for germline genetic testing. It is reported that approximately 8% of patients with breast cancer (BC) will have a clinically actionable germline mutation. However, lower than expected rates of testing are seen in both the acute and extended phases of BCSC. We sought to identify the number of patients seen in a long-term survivorship clinic who had previously undergone or currently qualified for germline testing, and the prevalence of germline variants in BC survivors. Methods: In a Nurse Practitioner (NP) led clinic, 2,184 non-selected BC survivors were screened to determine if: germline testing was previously completed or if update germline testing or initial germline testing is needed (with a 3-generation review of family history). BC survivors eligible for initial or update germline testing (411 patients) were provided with genetic education, counseling, and offered multigene panel testing. Seven (7) BC survivors declined testing. Results: From May 2019 – January 2021, 2,184 BC survivors were seen in the clinic. The average age of survivors = 60.2 yrs; average time since diagnosis = 10.7 yrs; and average age at diagnosis = 50.1 yrs, gPV were identified in 10.4%. Out of pocket cost on average was $50.00 for 2.0% of those tested. Conclusions: Within a comprehensive Breast Cancer program where genetic testing is common practice, there is an ongoing need to screen breast cancer (BC) survivors for genetic testing eligibility. A significant number of BC survivors will test positive for a pathogenic mutation (10.4%) a decade after an initial diagnosis. Genetic testing is a necessary step to stratify a BC survivors’ risk of developing secondary cancers, appropriate screening and prevention strategies, cascade testing, and for some, treatment planning. This individualized approach to BCSC is often described, but difficult to put into action. Time/access and drop rates with a referral model are barriers. Incorporating a point of care genetic testing model requires additional support (genetic extender), professional development, education, and a commitment to provide patient centric care.[Table: see text]

Genetic education of medical teachers and students

Предлагается новый подход к повышению квалификации по генетике врачей, преподавателей и студентов медицинских вузов, основанный на использовании дифференцированных учебных программ для специалистов различных медицинских профилей. New approach is proposed for genetic education of physicians, medical teachers and students based on differentiated training programs for different medical type specialists.

Incorporating of telementoring (Project ECHO) into practice: Efficacy of Point Of Service Testing-Breast Cancer (ePOST-BC).

113 Background: An estimated 327,630 breast cancers (BC) will be diagnosed in the US in 2020, and as high as 14% (45,868) may be related to a hereditary cancer syndrome. Testing eligible patients in clinical practice is hindered by multiple barriers including time, available workforce, cost, lack of organizational pathways, provider knowledge, as well as health disparities. To address some of these barriers, our team provided a telementoring and process improvement intervention for cancer care programs primarily serving rural patients across Kansas and Western Missouri using Project ECHO. We aimed to improve the process surrounding access to genetic education and testing for patients with BC. Methods: Rural and community cancer care teams were invited by the Masonic Cancer Alliance, the outreach arm of the University of Kansas Cancer Center, to participate in ePOST-BC. Five 1-hour Project ECHO sessions (community building, didactic, and case-based learning) covered topics included: 1) essential elements of HCS and genetic testing, 2) guidelines for genetic testing in BC 3) enhanced understanding of risk, screening, and management including precision medicine in HCS, and 4) overcoming barriers to genetic testing and management in low resource settings. Provider and practice readiness was assessed using the Organizational Readiness for Implementing Change survey. A REDCap database was used for registration, surveys and data collection. Results: Ten practices (6 = metro; 4 = rural) participated in the telementoring sessions and five practices participated in the optional process improvement intervention. Provider and clinic interest and participation was high and readiness was varied. Improvements were identified in knowledge, readiness, and patient access to genetic education and testing. The level of engagement in process improvement was impacted by an identified champion (either MD and/or APP), organizational commitment, and motivator (i.e., accreditation standard, business development). Conclusions: Rural and community oncology providers are interested and willing to engage in telementoring to improve implementation of point of service genetic education and testing. This improves provider knowledge, readiness and implementation of testing. Demonstrating a change in testing completion for eligible patients is difficult in a community setting without intensive data collection. Next steps include the incorporation of technology and standardized tools into practice to address provider and care team burden.