NSGC J.E.D.I. Organizational Assessment
In October 2020 and March 2024, NSGC partnered with The Exeter Group, a healthcare equity firm specializing in DEI, to conduct a J.E.D.I. Organizational Assessment of NSGC. The findings and recommendations from each assessment are detailed in the 2024 Executive Summary and the 2021 Executive Summary and Full Report.
Disclaimers
- We anticipate that parts of the reports may be hard to read or triggering. This may cause a wide range of feelings and emotions to arise, including defensiveness. Please practice self-care and take breaks as you need. If you sense defensiveness in yourself, please question this and try not to provide feedback from a defensive place.
- The 2021 Full Report is 300+ pages. It includes quotes and summaries of the member/staff survey findings, focus groups and stakeholder interviews. It reviews NSGC documents, policies and procedures, then closes with recommendations for NSGC. It may take significant time to read the report in its entirety.
View 2024 Executive Summary
View a Recorded Presentation of the High-Level Findings from the 2024 J.E.D.I. Organizational Assessment:
Q&A from the 2024 J.E.D.I. Organizational Assessment Webinar
View 2021 Executive Summary
View 2021 Full Report
View a Recorded Presentation of the High-Level Findings from the 2020 J.E.D.I. Organizational Assessment:
Open Comment Period Feedback on the 2020 J.E.D.I. Organizational Assessment
J.E.D.I. Updates
March 2024 Webinar: J.E.D.I. in NSGC: Updates, Resources and Best Practices
J.E.D.I. Resources
The following J.E.D.I. resources have been developed for genetic counselors and genomic healthcare professionals, educators and students. These resources have been created by NSGC members, Committees, Subcommittees and Special Interest Groups (SIGs) in coordination with NSGC members, staff and other stakeholders. If there are additional resources you believe would be valuable additions to this list, please contact us at nsgc@nsgc.org. The J.E.D.I. Stewardship Committee reviews suggested resources to add on a quarterly basis and in the order they are received.
- NSGC 2024 Justice, Equity, Diversity, and Inclusion (J.E.D.I.) Awareness Calendar - Created by the 2022 NSGC Membership Equity & Inclusion Implementation (E.I.I.) Subcommittee with review and input from the 2023 J.E.D.I. Stewardship Committee, this resource includes a list of holidays and cultural celebrations and awareness dates that can be referred to when scheduling meetings or events and to build inclusivity across NSGC’s membership.
- Autosomal Dominant Inheritance Graphic - This graphic resource was produced by the NSGC 2023 Prenatal SIG for genetic counselors to use as supporting visual aids when counseling patients on autosomal dominant inheritance concepts.
- Autosomal Recessive Inheritance Graphic - This graphic resource was produced by the NSGC 2023 Prenatal SIG for genetic counselors to use as supporting visual aids when counseling patients on autosomal recessive inheritance concepts.
- NSGC Cancer SIG Cancer Curriculum Toolkit - Members of the Education Group within the NSGC Cancer SIG Antiracism Subcommittee designed this toolkit for genetic counseling program cancer course coordinators and instructors. The aim of this toolkit is to supplement the oncology education of genetic counseling students and shed light on the various disparities that affect genetic/genomic research, clinical care, and access to GC services.
- Cancer Genetic Counseling Toolkit for Vietnamese Community Outreach - This toolkit was developed by Amy Huynh, Genetic Counseling Student, Rutgers University under the supervision of Diana Phan, CGC and Allison Wong, CGC and with support from Jessica Rispoli, CGC and Tiffany Nguyen Dolphyn, CGC.
- Diverse Workforce & Student Recruitment Resources
- Genomic Equity and Product/Service Development - The Genomic Technologies SIG created this slide deck to give an overview of the importance of equity in genomic healthcare and to describe the healthcare disparities that impact genomic medicine. The goal of this deck is to provide the background needed to set the stage for larger discussions on how you and your team can improve your current services and offerings to increase genomic equity. Learn more in the accompanying Perspectives article.
- A Guide to Facilitating Dialogue and Discourse About Antiracism Among Genetic Counselors - Funded by the 2021 NSGC Audrey Heimler Special Projects Award, this guide provides notes and guidelines for setting up dialogue and discourse experiences for genetic counselors about antiracism based on the authors' experiences modeling and facilitating IPADDS, the Inter-Program Antiracism Dialogue and Discourse Series.
- Health Equity for Rare Diseases Workshop - Developed by Vivian Duong, MPH, in collaboration with the E.WE Foundation, this workshop provides an overview of health, public health, health equity, social determinants of health, rare diseases and advocacy.
- North American Genetic Counseling Organizations DEIJ Collaboration Webinar - On October 10, 2024, representatives from the North American Genetic Counseling Organizations (NAGCO) hosted a webinar to share more about the organizations' collaborative efforts around Diversity, Equity, Inclusion and Justice (DEIJ) and individual organizations' resources and initiatives.
- Prenatal SIG Tips: Ensuring Equitable Care for Transgender and GNC Patients - Created by the NSGC Prenatal SIG, this resource includes helpful definitions around gender identity, recommendations for departmental changes to support gender minority competent care, and gender-neutral language and discussion tips to utilize in patient counseling.
- NSGC Practice Resource-Focused Revision: Standardized Pedigree Nomenclature Update Centered on Sex and Gender Inclusivity (2022) - The Practice Guidelines Committee reclassified the recommendations for standardized pedigree nomenclature as a Practice Resource with the addition of this Focused Revision. A major focus of this publication is clarification of the use of pedigree symbols and language in the description of the distinction between sex and gender, with a view to ensuring safe and inclusive practice for people who are gender-diverse or transgender.
- Reproductive Justice Toolkit - This toolkit was created by the NSGC Prenatal SIG and provides an overview of Reproductive Justice and how it relates to genetic counseling. The toolkit includes additional resources for genetic counselors to continue their education around Reproductive Justice as well as resources to support patients.
- Resource for GC Managers: Creating an Inclusive Workspace - This resource was created by Arianna Guillard and Joyti Khokar and the 2022 NSGC Membership Equity & Inclusion Implementation (E.I.I.) Subcommittee. It includes tips for creating an inclusive workspace, recommendations for considering DEI in the workplace, a DEI checklist for new employee orientation, and additional educational resources around this topic.
- NSGC Speaker Guide - Developed by the NSGC Education Committee, this handbook provides recommendations for speakers on how to make presentations and other educational activities effective, inclusive and accessible for all learners.
- Transgender and Gender-Diverse Patients in Cancer Genetics: A Resource Toolkit - This toolkit was developed to serve as a compilation of existing resources around cancer genetics and providing inclusive and affirmative care for transgender and gender-diverse (TGD) patients. The toolkit was compiled by Hannah Pepprock, MPH Student, UNC Gillings School of Global Public Health (Sept. 2022) under the supervision of Diane R Koeller, MS, MPH, CGC and with feedback from the Cancer SIG Gender Inclusion Subcommittee.
- X-Linked Inheritance AFAB Transmission Graphic - This graphic resource was produced by the NSGC 2024 Prenatal SIG for genetic counselors to use as supporting visual aids when counseling patients on X-linked inheritance concepts for people assigned female at birth (AFAB).
- X-Linked Inheritance AMAB Transmission Graphic - This graphic resource was produced by the NSGC 2024 Prenatal SIG for genetic counselors to use as supporting visual aids when counseling patients on X-linked inheritance concepts for people assigned male at birth (AMAB).
Educational Opportunities
Click each section below for additional J.E.D.I. educational opportunities from NSGC.
NSGC members can also access the course online, for 3.91 CEUs, for a fee.
- Module 1: Assessing personal bias or potential for biased behavior, presented by Ilana S Mittman, PhD, MS, CGC
- Module 2: The formation of bias and situational pressures, presented by Liza A. Talusan, PhD, CPC
- Module 3: Historical events, social environments and the perpetuation of societal power imbalances, presented by Lisa Werkmeister Rozas, Ph.D., LCSW
- Module 4: Bias in the US healthcare system and microaggressions, presented by Altovise T. Ewing, PhD, LCGC
- Module 5: Witnessing, experiencing or partaking in microagressions: Self-reflection and strategies, presented by LaShana Lewis
- Module 6: Guided meditation, presented by Nadine Channaoui, MS, CGC
Additional Resources Supporting Racial and Social Justice
Below are shared resources developed by NSGC, its members and other stakeholders related to Diversity, Equity and Inclusion. Thank you to everyone who has contributed to this list thus far. If there are additional resources you believe are valuable additions to this list, please contact us at nsgc@nsgc.org.
Books - click to view resources
Films and Documentaries - click to view resources
Series and Other Videos - click to view resources
Podcasts - click to view resources
Educational Websites, Articles and Series - click to view resources