<aside> 💡 This document details the key changes and major progress points when developing the language toolkit.

The Key stages outlined below are as follows:

Research Phase 1, Round 1 - Initial research and getting a baseline Research Phase 1, Round 2 - Product build and preparing for research rounds Research Phase 2, Round 1 - Definitions and product testing round 1 Research Phase 2, Round 2 - Definitions and product testing round 2 Research Phase 3, Round 1 - Post internal ‘soft’ launch

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Research Phase 1, Round 1: (February - March 2022)

At this stage, the project was very internal. The input was mainly focused on Genomics England colleagues in an attempt to understand how language was used across the company. Consultations with Alice Popejoy, Ewen Birney, and Semine Long-Callessen.

Research Methods at this stage:

• Desk research on existing work done at GEL
• A literature review of papers
• 1-1 interviews with 28 experts across GEL
• 3 focus groups and workshops with ELT, Cancer, Rare Disease and Newborns team
• GEL-wide survey on language around diversity.
• Initial discussions around monitoring and evaluation and how to track change and impact of the toolkit

Learnings at this stage:

• Attitude insight: People are uncomfortable talking about Race, Ethnicity and Ancestry, and this discomfort makes them create mental shortcuts to avoid discussing the nuance behind terminology
  Example (quote from survey, anon) ”I use the term 'black' a lot but I have noticed that white people always start when I use it as if there is a better term to use. Consequently I (I am white) then feel nervous and have to psych myself up to say it the next time. I only get this reaction from white people though.”

• Attitude Insight: There is a strong correlation between most comfortable using terminology around Race, Ethnicity and Ancestry, and those misusing terminology in wrong and misleading contexts: Example: A colleague on the DD team overhears a senior colleague with a bioinformatics background saying that “this is a Black genome”

• Product Insight: In order to gain the most uptake, especially with more senior stakeholders, we needed a system which feels intuitive ELT member 01 - ”I just want a list of words I can and can’t use, and why” ELT member 02 - “Is there a resource I can go to that just tells me what is acceptable?” ELT member 03 - “Is it okay to say the work ‘mixed race’ nowadays?” Programme Lead - “I it’

• We need to create a toolkit which straddles the balance between quick understandings of race, ethnicity and Ancestry and introductions to the complexity and nuance around these concepts

Developments at this stage: