Maxine Mackintosh - Theme Lead, Data Science for Health Equity
Marie Nugent - Community Manager, Diverse Data initiative at Genomics England
If you weren't at The Genomic Data Diversity Initiative: Information Sessions & Kick-offs which took place in August, never fear, we've got you covered!
But first things first..."The Genomic Data Diversity Initiative" was a holding name- we're happy to say after much speaking to users and internal brainstorming we're calling this project link23 (more on why/how we chose this name at a later date, but we'll be hanging out at link23.world so watch this space!).
As a reminder, link23 is an open source, community-driven project which aims to provide all the practical tools and resources that researchers, community leaders, clinicians and decision-makers in academia, industry and the public sector may need to ensure that the genomic projects they work on are as equity-enhancing as possible.
These sessions aimed to be an opportunity for current and potential partners and members of the genomic/data/equity community to meet, get a bit more information and detail on the initiative's set up so far, and help brainstorm on few key decisions the initiative is looking to make in the coming few weeks. Particularly at this early stage, we wanted to ensure we were reflecting the views and opinions of community in the initiative's design.
We've summarised the discussion and key themes below, but check out the slides or the Jamboard (which is basically an online white board) directly if that's helpful!
Why do we need link23?
The need for diversity in genomics is becoming increasingly better understood by the broader genomics community
The diversity agenda has been largely dominated by the need to improve the ancestral imbalance found in genomic datasets - This is still very much needed
There is now increasing attention to wider systemic factors that create environments for inequities to flourish (e.g. strategic funding, capacity building etc)
BUT, there is a gap in how to practically support people actually doing the work to do so in way that takes equity into account, or even better, improves it (especially when most things are working against you)
Effectively, we want link23 to make doing equitable work in genomics too easy not to do
Painting a picture of link23 in the future
The place to go for practical solutions to improve diversity in genomics (and health)
A haven for open source solutions (or at least better quality/higher reproducibility/generalisability)
Community-controlled: Driven by passionate individuals but with institutional support for community infrastructure
100s of tools
Highly engaged community (online and offline)
Constant development, implementation, scaling and sharing of solutions
A kind and fun environment
We what should link23 actually do? And what activities can it run in its first 6 months
Through a brainstorming activity on the Jambord, participants suggested activities which broadly fell into 10 themes:
Create and amend tools
Promote and share existing tools
Raise awareness of issues
Discuss challenges for working in the field
Connect people across different disciplines/sectors
Build and sustain a community
Put community into action
Provide guidance on best practice/standards
Generate data (we see this one to be a little out of scope but making data more FAIR is on our radar!)
We also have a collection (see above or slide 3 of the Jamboard) of specific projects, events, activities or campaigns that link23 could help host/run/facilitate that address issues and area our early contributors want to work on. These range from mapping sources of genomic data on diverse populations, to facilitating a Meet & Greet with those working on genetics projects in Africa, to more general link23 activities like hosting more in-depth brainstorming opportunities, providing guidelines for the community to flourish in and creating templates.
For the core link23 team (so far...):
Collate a starter-for-10 toolbox of existing tools
Confirm pre-launch first wave of link23 partners
Finalise link23 identity/website
Plan first 6 months of activities - most of which should come from you! We’ll help with the admin and organising
Bring together an organising team (see ad here)
Recruit Open Source Lead post for link23
For potential partners and contributors:
Join our Slack workspace (within DSxHE) - join #theme-genomics
If you have a tool, make sure you've told us! (email email@example.com)
Get your organisation “formally” signed up as a partner (see what it means to be a partner)
Tell your colleagues/friends (by sharing the link23.world website which will have increasingly more information in the coming weeks)
Feed into at least one thing in the design and development of link23 so we really are a sum of our parts
That's all folks! Any questions, please email the Community Manager for link23 Marie at firstname.lastname@example.org