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Justice, Equity, Diversity and Inclusion (J.E.D.I.)

Justice, Equity, Diversity and Inclusion Activities

NSGC members have been actively engaged in activities related to Justice, Equity, Diversity and Inclusion (J.E.D.I.) for many years that predate the timeline below. The activity listing is compiled with information that NSGC is aware of and is regularly updated as we receive additional information.

1992

The first D.E.I. article was published in the first issue of the Journal of Genetic Counseling.

1993

The inaugural Audrey Heimler Special Projects Award (AHSPA) was issued to Vivian Wang for the development of a training handbook about cross-cultural genetic counseling which has been field tested and incorporated in several genetic counseling training program curricula. 

1994

The "Access to Underserved Populations Subcommittee" of the NSGC Education Committee was created.

1996

The Multicultural Genetic Counseling Special Interest Group (SIG) was created.

The Audrey Heimler Special Projects Award was issued to Jamie Israel to support the development of a comprehensive manual for genetic counselors about various aspects of deafness.

1998

The first Special Issue on multicultural genetic counseling for the Journal of Genetic Counseling was published.

1999

The Jane Engelberg Memorial Fellowship (JEMF) Full Member Award was issued to Rebecca Rae Anderson for their project entitled "Religious Traditions and Prenatal Genetic Counseling: A Survey."

2002

The Jane Engelberg Memorial Fellowship (JEMF) Full Member Award was issued to Christina Palmer and Don Hadley for their research around the validity of specific models for evaluating how people perceive and evaluate risks, including in genetic testing." 

2004

The Jane Engelberg Memorial Fellowship (JEMF) Full Member Award was issued to Katy (Catherine) Downs for their project entitled "Promoting Communication and Trust in Multicultural Genetic Counseling: Working with Interpreters." 

2005

The NSGC Board of Directors, under President Kelly Ormond, funds a two-day retreat in August 2005 to address racial and ethnic disparity in the NSGC membership.

2006

A report authored by Tene Franklin, Barbara Harrison, Kelly Ormond and Vivian Ota Wang on the 2005 retreat to address racial and ethnic disparity in the NSGC membership was presented to the NSGC Board of Directors. View the report: "Addressing Racial and Ethnic Disparity in NSGC Membership"

2008

A Cultural Competency Task Force was chartered to investigate ways in which NSGC could drive cultural competency within the organization and profession.

2009

A report from the NSGC Organizational Cultural Competence Task Force was delivered to the NSGC Board of Directors. View the Task Force recommendations

The Jane Engelberg Memorial Fellowship (JEMF) Full Member Award was issued to Nancy Steinberg Warren for their project entitled "Enhancing Cultural and Linguistic Competence in the Genetic Counseling Profession." 

2010

The Genetic Counseling Cultural Competence Toolkit, supported by the 2009 Jane Engelberg Memorial Fellowship, was developed by Nancy Steinberg Warren as a resource for the profession. View the Genetic Counseling Cultural Competence Toolkit

2014

The Audrey Heimler Special Projects Award was issued to Kara Anstett and Sharon Chen to support their project "Development of a Website to Facilitate the Recruitment of African Americans and Latinos into the field of Genetic Counseling." View the website project proposal

2016

The Audrey Heimler Special Projects Award was issued to Priscila Delgado Hodges to support the project "Development of Spanish Genetic Counseling Lexicon.”

The 2017 JEMF Student Research Awardees included Julianne Whitleigh for the project "Do cultural or language barriers exist in the delivery of the diagnosis of Down syndrome? A study comparing the diagnosis experience of English- and Spanish-speaking parents of children with Down syndrome."

2017

The 2017 JEMF Student Research Awardees included Natalie Waligorski for the project "Accessibility of Prenatal Genetic Counseling Services Among Incarcerated Women" and Cheyenne Dewey for the project "What Walls? Demystifying the Role of Race/Ethnicity in Genetic Counseling Supervisory Relationships."

2018

In April 2018, NSGC published an updated position statement on Disability.

The Professional Issues Panel held during NSGC's 2018 Annual Conference focused on issues of diversity within the profession via discussion with invited speaker, Erica Joy Baker and NSGC President Erica Ramos

The NSGC Board of Directors included Diversity & Inclusion as one of the four pillars in NSGC's 2019-2021 Strategic Plan. View NSGC's 2019-2021 Strategic Plan

2019

NSGC formed the Diversity & Inclusion (D&I) Task Force.

NSGC's statement on Diversity, Equity and Inclusion was approved. 

The report of the D&I Task Force was prepared and delivered to the NSGC Board of Directors. View summary report of the D&I Task Force

NSGC established the Leader in Diversity & Inclusion Award and the Leader in Cultural Advocacy Award. Learn more about past award recipients

NSGC participated in the benchmarking survey for the Association Forum's Welcoming Environment Research study. This research shines a spotlight on the disconnect between what are identified as necessary Diversity, Equity and Inclusion (DEI) strategies and where these strategies are actually being implemented in professional membership associations.

2020

NSGC issued an RFP for a DEI consultant to assess and make recommendations for NSGC to advance diversity, equity and inclusion within the society in line with the recommendations of the 2019 D&I Task Force. View the RFP

The NSGC Board established a Diversity, Equity and Inclusion (DEI) Advisory Group to carry forward the work of the 2019 D&I Task Force.

NSGC engaged The Exeter Group, a DEI consulting firm, to assess DEI within NSGC and make recommendations for NSGC to achieve the vision outlined in our DEI statement.

NSGC established a website to serve as a resource for activities related to diversity, equity and inclusion. View NSGC's J.E.D.I web page

NSGC issued a statement on social and racial injustice

On June 9, NSGC held a forum on Social and Racial Justice.

The Exeter Group commenced data collection efforts, including a member survey, focus groups, stakeholder and staff interviews.

On July 31, NSGC held a call with key committee leaders and organizational partners to introduce the work of The Exeter Group.

The Journal of Genetic Counseling released three special issues on minority health disparities. View Volume 29, Issue 2; View Volume 29, Issue 3View Volume 29, Issue 4

On October 1, NSGC held a webinar to introduce The Exeter Group to the NSGC membership. 

The Audrey Heimler Special Projects Award was issued to Lila Aiyar, Tala Berro, Nadine Channaoui and Michelle Takemoto for the creation of a DEI project evaluation tool. 

The 2020 JEMF Student Research Awardees included Nicole Huser for the project "Amplifying Transgender and Gender Nonconforming Voices in Genetic Counseling Gender-Affirming Care Education."

The Exeter Group presented preliminary data from the DEI membership survey during the Professional Issues Panel at the 39th Annual Conference. 

On December 15, NSGC held a call with the Minority Genetics Professional Network (MGPN) to discuss preliminary data from the DEI membership survey. 

2021

The NSGC Board established the J.E.D.I. Stewardship Committee as the next iteration of the DEI Advisory Group, converting the group into a standing committee to coordinate and evaluate the effectiveness of NSGC's DEI strategy. 

NSGC announced a virtual option, in addition to the in-person event, for the NSGC 40th Annual Conference. 

A report of the results and recommendations from NSGC's 2020 DEI Organizational Assessment conducted by The Exeter Group was released. 

NSGC opened a six-week comment period for input and feedback from stakeholders on how NSGC should prioritize the recommendations by the Exeter Group. The NSGC J.E.D.I. Stewardship Committee reviewed and summarized member and stakeholder input from the comment period. View a summary in Perspectives

NSGC held calls with key stakeholders, including NSGC Committee chairs, SIG leaders and organizational partners to discuss how their work may align with recommendations provided by The Exeter Group. 

The NSGC Board of Directors held a strategic planning session that incorporated the input and feedback from the open comment period.

NSGC released the organization's next strategic plan, in which J.E.D.I was included as a strategic pillar and woven throughout the other pillars of the plan. View NSGC's 2022-2024 Strategic Plan

NSGC established the NSGCares Community Engagement Award. View past award recipients 

The Audrey Heimler Special Projects Award was issued to Amanda Bergner, Annie Bao, Gayun Chan-Smutko and Janelle Villiers to support their project “Intra-Professional Antiracism Dialogue & Discourse Series (IPADDS)." View "A Guide to Facilitating Dialogue and Discourse About Antiracism Among Genetic Counselors"

The 2021 JEMF Student Research Awardees included Abigail Sveden for the project "Introduction of the genetic counseling profession by teachers in BIPOC-majority high schools."

NSGC President, Sara Riordan, provided an update on NSGC's J.E.D.I. action steps during the annual State of Society Address at the 40th Annual Conference in September.

In November 2021, the NSGC J.E.D.I. Action Plan Task Force was formed to develop a recommended J.E.D.I. Action Plan.

2022

NSGC's first dedicated J.E.D.I. staff member was hired.

In April 2022, NSGC published a position statement on Confronting Racism, Oppression, & Inequity in Genetic & Genomic Medicine.

The J.E.D.I. Action Plan was approved by the NSGC Board of Directors in June 2022, and the Action Plan Dashboard is updated quarterly on NSGC.org/JEDI. View NSGC's J.E.D.I. Action Plan

NSGC's Diversity, Equity, Inclusion and Belonging (DEIB) Policy was approved by the Board of Directors in September 2022. View NSGC's DEIB Policy

NSGC established organization-wide definitions of Justice, Equity, Diversity and Inclusion that guide and inform NSGC's work and policies. View NSGC's J.E.D.I. definitions

NSGC continues to provide conference sessions in a hybrid format (e.g., online and in person) at the 41st Annual Conference and begins including an ask in the NSGC Call for Speakers for Session Submissions to incorporate actionable J.E.D.I. into all applicable sessions.

The Audrey Heimler Special Projects Award was issued to Priyanka Ahimaz, Carli Andrews and Jessica L. Giordano for the development of patient-driven guidelines on collecting race, ethnicity and ancestry information during pedigree construction. 

The Jane Engelberg Memorial Fellowship (JEMF) Full Member Award was issued to Sara Pirzadeh-Miller for her project “Genetic Counseling Service Delivery and Outcomes in Diverse and Underserved Populations.” 

The JEMF Student Manuscript Award was issued to Nicole Huser for the research project, "Improving gender-affirming care in genetic counseling: Using educational tools that amplify transgender and/or gender non-binary community voices."

The 2022 JEMF Student Research Awardees included Claudia Borodziuk for the project "Landscape of LGBTQ+ Patients' Access to Equitable Reproductive Genetics Services: A Qualitiative Study of Genetic Counselors Experiences and Perspectives" and Mackenzie Maher for the project "Acceptability of a bilingual chatbot of cancer genetic counseling amongst Hispanic community members."

2023

The NSGC Board of Directors and industry partners awarded $35,000 in scholarships in 2023 to NSGC members whose institutions do not provide financial support to attend the Annual Conference or for genetic counselors who are currently unemployed.

The Audrey Heimler Special Projects Award was issued to Cindy Chin, Lisa Karger and Emily Soper to support their project "Gallery Walk" - a culturally tailored novel educational tool for increasing awareness of genetic counseling, genetic testing and hereditary breast and ovarian cancer (HBOC) susceptibility in the Black population. 

The 2023 JEMF Student Research Awardees included Minseo Jeong for the project “Incorporating Restorative Justice as a Framework and Practice for Building Relationships and Accountability in Genetic Counseling” and Traevia Morris for the project “Understanding the impact of inquiring about race, ethnicity, and ancestry during pedigree construction on patients.”

In October 2023 the NSGC Board approved reduction in Student Member dues to $50 (from $150) and launched a new All-access Membership model allowing unlimited membership in NSGC SIGs with payment of member dues to reduce cost barriers for current and potential members.

NSGC established the The Lauren Ryan Genetic Counselor Access Memorial Award, which aims to increase access to the field of genetic counseling for traditionally underrepresented or minority populations through financial support.

NSGC volunteers hosted multiple outreach events for high school and college students and provided free day-passes to the 42nd Annual Conference for local college students.

In partnership with the J.E.D.I. Stewardship Committee, the Education Committee re-released a J.E.D.I.-themed, CEU-eligible lecture series available at a discounted cost. Access the lecture series

NSGC published a J.E.D.I Awareness Calendar, developed by the 2022 NSGC Membership Equity, Inclusion and Implementation (E.I.I.) Subcommittee and 2023 J.E.D.I. Stewardship Committee, for staff and volunteers to refer to when scheduling meetings or events and to build inclusivity across NSGC's membership. View the J.E.D.I. Awareness Calendar

2024

NSGC hosted the inaugural Leadership Summit for Committee Chairs and the Board of Directors in January 2024.

NSGC launched the Disciplinary Procedures Process and established the Disciplinary Procedures Committee. View NSGC's Disciplinary Procedures Policy

In March 2024, the NSGC J.E.D.I. Stewardship Committee partnered with NSGC Committees and SIGs to host a webinar sharing J.E.D.I. initiatives and resources developed for NSGC members. View the webinar recording: J.E.D.I. in NSGC: Updates, Resources and Best Practices.

NSGC updated the J.E.D.I. Action Plan Dashboard to provide more consistent and detailed status updates related to NSGC's organizational J.E.D.I. goals across six operational impact areas.

In August 2024, NSGC released the findings and recommendations from the 2024 J.E.D.I. Organizational Assessment conducted by The Exeter Group. On August 21, NSGC and Exeter hosted a webinar for NSGC members sharing the high-level findings from the assessment. 

In September 2024, NSGC published an updated position statement on Disability.

The Audrey Heimler Special Projects Award was issued to Monisha Sebastian, Priyanka Ahimaz, John Greally, Grace Kavanaugh, Neil M. Shah and Melissa Wasserstein to support their project "Evaluating International Genomics Providers’ Needs and Perspectives on a Global Genomics Services Directory."

The Jane Engelberg Memorial Fellowship (JEMF) Full Member Award was issued to Kimberly Zayhowski for her project "Empowering Transgender and Gender Diverse Individuals: Community-Led Educational Resources for Patients about Genetic Risk Assessment in Gender-Affirming Mastectomies."

Upcoming Activities

NSGC is committed to sharing regular updates regarding our diversity, equity and inclusion work. To learn more detailed updates about NSGC’s progress in achieving the recommendations in the J.E.D.I. Action Plan related to Communication & Transparency, Partnership & Outreach, Education & Training, and the Annual Conference, please visit NSGC.org/JEDI to view the J.E.D.I. Action Plan Dashboard.

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