Equity, Diversity & Inclusion Workshop�Hosted by: EDI Advisory Group & REWS Diversity

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Agenda

INTRODUCTION: EDI Work across GA4GH

TOPICAL SESSION 1: Onboarding

TOPICAL SESSION 2: Participation Levels

TOPICAL SESSION 3: Equity by Design: EDI Standards Review

BRINGING IT TOGETHER: Whiteboarding Session

15 min

25 min

25 min

25 min

30 min

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E.D.I?

• Equity: the removal of systemic barriers and biases to enable all individuals to have equal opportunity to access and benefit from scientific advancement (referenced in the GA4GH Framework)�
• Inclusion: the practice of ensuring that all individuals and their views are valued and respected and are equitably supported and considered. �
• Diversity: a measure of how an individual’s personal characteristics differ from those of the normative majority of an organization. Unique in a global and health focused group; covers concepts such as gender, race, place of origin, and religion, but also role, sector, viewpoints, access to technology, healthcare access, level of care, etc.

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EDI in two related levels

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Why these issues impact technical standards

• The way data is collected is impacted by:
• Access to technology
• Religion, Gender, Socioeconomic status, etc
• Skills gap and time gap of healthcare workers
• Different practices and norms: admin, screening, diagnostics, regional needs
• Divergent regulatory frameworks: what is appropriate & ethical in different contexts
• Who benefits? The scientists or those being studied?
• What is open might not be accessible: Consider the infrastructure in LMICs
• How often does the tool need to be updated to retain access to the global network?
• Is there enough training to help close the gap?

Credit to Amel Ghoulia

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EDI Goal

Outside the scope:

• Genomic data sets
• Bioinformatics education

This will impact how you work.

We want teams using this future guidance to be involved in its creation. You know what changes are realistic!

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Key EDI Issues to Resolve Across GA4GH

Onboarding

Participation Levels

Equitable Standards Review

GA4GH EDI Advisory Group

Regulatory & Ethics Work Stream

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Working Session 1: Onboarding�Ashley Hobb (DNAstack)

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Onboarding: Objectives

Help newcomers to the GA4GH community:

• feel welcome, oriented, and “in the right place”
• see themselves and their place in the community
• feel comfortable participating for the duration that’s most applicable to them
• connect with information that will bridge the knowledge gap

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How People Join GA4GH

Discovery

• Hear about GA4GH at a conference
• Read a journal article or news story
• Assigned by employer to get involved
• Word of mouth / network
• Online search, e.g. looking for a standard or tool

Joining

• Go to website
• Follow on social media
• Watch a talk
• Start with newsletter / email updates
• Attend Plenary meetings
• Join a specific Work Stream or Sub Group
• Go to Github (review or contribute)

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Topical Session 1: Onboarding

What are the key elements to equitable and inclusive community onboarding?

?

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Topical Session 1: Onboarding

What supports do you wish had been available when you started participating in GA4GH?

?

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Onboarding: Roadmap Proposal

Initial Roadmap

• Welcome Video
• Email Workflow
• Support Website Redesign
• Landing Page
• Work Stream Meeting Best Practices

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Longer Term:

• Mentorship Program
• Standards Orientation, e.g. tutorials, training materials, plain-language backgrounders

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Working Session 2: Participation Levels�Geraldine Van Der Auwera (Broad Institute),

Elijah Oladipo (Adeleke University)

Presented by Angela Page (GA4GH)

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Participation Levels Roles: Roadmap Proposal

• Purpose:
• Identify strategies to enable more equitable movement between the various levels at which individuals can participate.
• Goals: Increase EDI within GA4GH positions of influence
• Projects:
• EDI Analysis of GA4GH role structure / barriers
• Leadership Selection Pool
• Tactical EDI issues

GA4GH Participation Levels / Roles

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• Observer
• Presenter
• Active Contributor (volunteer or assigned)
• Subgroup Lead
• Work Stream Lead
• Driver Project Champion
• Vice Chair
• Chair
• Strategic Advisory Board Member
• Board of Directors (GA4GH Inc.)
• Funders Forum
• Implementers/Beta-testers

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Topical Session 2: Participation Levels

Discussion Questions

1. How can GA4GH more equitably identify and promote future leaders?�
2. Are any work streams willing to agree to pilot this guidance when available?

?

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Working Session 3: EDI in the Standards Review / Development Process

Yann Joly (McGill University),

Michael Beauvais (McGill University)

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EDI in Standards Development: Roadmap Proposal

Overarching objective: “EDI by design”

Working out a definition of EDI that is specific to genomic standards (serving an educational purpose and then informing future work)

Explicitly recognizing the geographic areas that were considered and/or the expertise of the working group who developed such a standard (e.g., DUO is developed with predominantly Western notions of consent)

Adopting a "design decision" framework for EDI - explicitly engaging with EDI concerns and then publicly justifying choices (e.g., the Design Decisions doc for the Variation Representation Specification)

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Topical Session 3: EDI in Standards Development

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Discussion Questions

• How may EDI concerns feature in the conception and development of standards?�
• Are the potential outputs attending to the most pressing EDI concerns? If not, why?

?

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Whiteboarding Session

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Whiteboarding Session: Bringing the ecosystem to reality

bit.ly/GA-EDI-Connect21

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EDI Planning

Wrap Up & Actions

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Want to join? Email stephanie.li@ga4gh.org

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