Following NSGC’s open comment period for The Exeter Group’s DEI Assessment Report, members of the Justice, Equity, Diversity and Inclusion (J.E.D.I.) Committee had the unique opportunity to review responses and synthesize a high-level memo for NSGC’s Board of Directors. It is our hope this memo aided the Board’s mid-July strategic planning. In this blog post, we want to update NSGC’s community on J.E.D.I. efforts, share highlights from our Board memo and share some next steps, including how you can get involved.

514 individual and group comments, feedback from external and internal partners, and the lived experiences of committee members informed our memo. While it is not possible to calculate response rate without knowing the number of potential commenters, the overall rate was likely low. However, we were encouraged to see comments from NSGC members, non-members, lapsed members, genetic counseling students, potential students, and others.

Urgency, Impact, and Priority

Commenters rated recommendations by highest urgency (“Take Action over Talk” rated the highest) and highest impact (“Take Action over Talk” and “Address Barriers to Entry” rated the highest). Many commenters were enthusiastic about Exeter’s next steps and wanted to rally together to act toward change before losing momentum. Several echoed these themes and expressed an urgency for the Board to act immediately. Others recognized that prioritizing actions must be a “process” to ensure sustainable change. Some desired NSGC’s Strategic Plan to include efforts to partner with genetic counseling training programs and incorporate J.E.D.I. efforts into the Annual Conference and CEU offerings. Commenters also sprinkled concrete ideas throughout the feedback.

Respondents highlighted the need to increase recruitment of underrepresented communities by diversifying and increasing the pathways to reach the genetic counseling profession. Suggestions included increasing awareness via consolidated materials to facilitate outreach efforts, decreasing barriers through application and interview travel scholarships, and accepting alternative routes to success for prospective students. Additionally, some respondents supported increasing funds/funding mechanisms to support student engagement and retention within NSGC by lowering or eliminating student NSGC and SIG membership fees.

Relatedly, commenters noted the “clique culture” within NSGC, which deters diverse individuals from joining the field. Diversifying the field cannot be attained without fixing problems internal to NSGC, including the need to make genetic counseling training programs safer for students. Some supported the addition of a paid diversity expert or ombudsman within NSGC for members to report incidents. A code of conduct for NSGC was suggested as a starting point to alleviate concerns regarding how members would be held accountable.

Recurring Themes

Repeated calls for increased diversity of NSGC leadership and transparency in their selection occurred. Many expressed that Board member roles are unclear and create a barrier of mistrust. SIG leaders felt the process between SIGs and NSGC is broken and should be fixed by increasing communication and simplifying committee and SIG structure. An organizational map could clarify NSGC governance and its relationship with partners and sharing Board meeting summaries with the membership would foster transparency and understanding.

Others wanted increased accessibility and a change to the ‘ableist’ NSGC culture through more inclusive resources, including for those who identify as having disabilities. Many called for improvements to NSGC’s website by offering other language options and to the Annual Conference through closed captioning. J.E.D.I. initiatives extend beyond race and ethnicity, and commenters asked NSGC to consider ways it can include all without defaulting those with disabilities to a virtual option. Commenters also called for more transparency about conference scheduling conflicts that might arise due to observances of holidays.

A final theme related to individuals who, based on their comments, do not have J.E.D.I on their radar. It is important to reach these individuals and offer education and training on J.E.D.I initiatives. While the status quo may be comfortable for some, success can’t solely be measured by self-report, as some may not want to report their truths. Because it is hard to recognize who might benefit most from training, it will be important to provide these resources to the entire membership.

Looking Forward

The J.E.D.I. Committee was privileged to read these raw and deeply personal comments. The feedback illuminated that not everyone is in the same place in this work, including NSGC’s partner groups. NSGC will need to collaborate with partners to move ideas forward and balance that with individual member responsibility. Fears of making mistakes and uncertainty about how to meaningfully engage were common. At the same time, underrepresented members expressed feeling exhausted from being repeatedly called upon to “teach” and relive trauma by sharing their truths to raise awareness. NSGC will need to consider carefully how, why, and when it asks individuals to engage in this work.

Skepticism of NSGC from some commenters comes from feelings of exclusion from the history of past inaction and lack of recognition of previous harms. Trust is earned over time, and we hope this process is a good first step. Openly acknowledging the lack of diversity within the field and seeking to implement suggestions found within the Exeter report and its feedback can help center the “why” of our work. It is the hope of the J.E.D.I. Committee that the Board took these comments, suggestions, and truths to heart in their strategic planning to implement real change. Thank you to all who took time and energy to participate in the open comment period, hopefully shaping a meaningful and sustainable path forward.

Next Steps and Ways to Get Involved

• Consider applying or nominating someone for the J.E.D.I. Action Plan Task Force
  • To apply, use this link
  • To nominate someone, use this link
• Listen to an upcoming NSGC Podcast Series episode about the open comment period
• Catch J.E.D.I. related content at the 2021 Annual Conference if you are attending
• Engage in NSGC’s annual call for volunteers coming in September – all Committees will have charges related to the J.E.D.I. Action Plan

For more details and resources to learn more, visit NSGC’s J.E.D.I. webpage at www.nsgc.org/JEDI

Brady Bunkelman (He/They) is currently entering their second year as a graduate student in genetic counseling at Northwestern University

Aarin Ables Williams, MS, LCGC (She/Her) is a clinical genetic counselor at Kaiser Permanente Southern California