Operationalizing the Reciprocal Engagement Model of Genetic Counseling Practice: a Framework for the Scalable Delivery of Genomic Counseling and Testing

Abstract

With the advent of widespread genomic testing for diagnostic indications and disease risk assessment, there is increased need to optimize genetic counseling services to support the scalable delivery of precision medicine. Here, we describe how we operationalized the reciprocal engagement model of genetic counseling practice to develop a framework of counseling components and strategies for the delivery of genomic results. This framework was constructed based upon qualitative research with patients receiving genomic counseling following online receipt of potentially actionable complex disease and pharmacogenomics reports. Consultation with a transdisciplinary group of investigators, including practicing genetic counselors, was sought to ensure broad scope and applicability of these strategies for use with any large-scale genomic testing effort. We preserve the provision of pre-test education and informed consent as established in Mendelian/single-gene disease genetic counseling practice. Following receipt of genomic results, patients are afforded the opportunity to tailor the counseling agenda by selecting the specific test results they wish to discuss, specifying questions for discussion, and indicating their preference for counseling modality. The genetic counselor uses these patient preferences to set the genomic counseling session and to personalize result communication and risk reduction recommendations. Tailored visual aids and result summary reports divide areas of risk (genetic variant, family history, lifestyle) for each disease to facilitate discussion of multiple disease risks. Post-counseling, session summary reports are actively routed to both the patient and their physician team to encourage review and follow-up. Given the breadth of genomic information potentially resulting from genomic testing, this framework is put forth as a starting point to meet the need for scalable genetic counseling services in the delivery of precision medicine.

Factors affecting breast cancer patients' need for genetic risk information: From information insufficiency to information need

“…In a recently published study based on this dataset, having biological children was generally not related to participants' preferences for different types of GRI (Kaphingst et al, 2018) (Schmidlen et al, 2018). The findings of this study will be able to contribute to this mutual process by helping genetic counselors to understand patients' needs based on their unique psychosocial factors.…”

“…According to the Reciprocal Engagement Model of genetic counseling that supports a patient‐centered genetic counseling process (Veach et al, ), a mutual process occurs when the genetic counselor and counselee participate in an educational exchange of genetic and biomedical information that is affected by their identities. This model incorporates the patients' values, knowledge, experiences, and beliefs, allowing for building a mutual relationship (Schmidlen et al, ). The findings of this study will be able to contribute to this mutual process by helping genetic counselors to understand patients' needs based on their unique psychosocial factors.…”

Genetic counseling for consumer‐driven whole exome and whole genome sequencing: A commentary on early experiences

“…Thus, employed in our approach to counseling, is a Reciprocal Engagement Model (REM) of counseling (Redlinger-Grosse, Veach, LeRoy, & Zierhut, 2017;Schmidlen et al, 2018;Veach, Bartels, & Leroy, 2007), in which the client and counselor engage throughout the session on questions and priorities identified by the client.…”

Early Outcome Data Assessing Utility of a Post-Test Genomic Counseling Framework for the Scalable Delivery of Precision Health

“…As previously reported, we developed a novel post-test genomic counseling framework [ 15 ] based on qualitative research [ 16 ] and key health behavior theories [ 17 ]. Following receipt of genomic-based results, the counseling framework provides the patient with an opportunity to set the counseling agenda by selecting the specific test results they wish to discuss, specifying questions for discussion, and indicating their preference for communication modality (telephone, telegenetics or in-person).…”

“…In the demonstration project evaluated here, we focus on the application of this novel genomic counseling framework [ 15 ] on patients with chronic disease who have received online genomic-based test reports. This demonstration project had several aims.…”