New report: Equity of access and return in global genomics

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global genomics

The latest report from PPP’s Global Genomics Insight series highlights the need to increase the accessibility of genomics medicine globally.

Public Policy Projects (PPP) has launched its latest Global Insights report: Equity of Access and Return in Global Genomics report. Since 2019 PPP has been actively publishing reports in genomics, some pertaining specifically to UK policy and others with a focus on deriving globally applicable insights.

This report is PPP’s second Global Insights Report collates the insights from the world’s leading genomics experts, the aim of which is to ensure the benefits of genomics for human health are equitably accessible to all.  The programme is sponsored by Amazon Web Services, Genome Canada, Illumina, Perkin Elmer, ThermoFisher Scientific and The Wellcome Sanger Institute – PPP has retained full editorial control throughout. 

For genomics to be accessible to all, it must address the needs of all. As such, the report calls on the genomics community to create more equitable approaches to benefit sharing, recognising the barriers to participation that communities face and acknowledging and accepting them – rather than blaming excluded communities for not participating in genomics.  

The challenges of creating a more equitable approach to access and return in global genomics is not solely an issue of creating a more diverse dataset, nor is it a challenge faced exclusively by low-and-middle-income countries (LMICs). Every jurisdiction in the world has much to do to address these challenges for all of their populations, including their Indigenous and minority communities. 

Equity of Access and Return also highlights that different countries are in vastly different stages of readiness for implementing human genomics programmes. The report emphasises how the WHO has a huge role to play in helping to articulate and support global participation in genomics. Implementing the recommendations of the WHO Science Council Report, Accelerating access to genomics for global health, may aid in achieving this. 

Alongside guidance from the WHO, industry has a significant role in spreading the benefits of genomics equitably and globally.  However, the report highlights that the benefits of what industry can offer are not widely known, particularly in the countries which have the greatest need to engage. Different elements of industry will have different considerations and different means of making a contribution but the concept of a Voluntary Code of Conduct merits further consideration. 

Chair of PPP’s Global Genomics Programmes and Senior Advisor in Global Genomics, Kate Orviss, said: “As an independent convener of thought leaders in the genomics ecosystem globally we are able to have conversations and ask questions that any one of our cohort might struggle to do in isolation. We are all about having accessible conversations about key issues and hearing multiple perspectives which can inform everyone’s thinking at a higher level rather than focus on the science or technology or individual operating policies or procedures. Our network also provides a useful place for connections to be made and conversations to take place.” 

Phase three of PPP’s Global Genomics programme commences in March 2023 and PPP’s Global Genomics Conference will take place as a hybrid event, with online webinars on the 7th and 8th of November and an in-person conference on the 9th of November in London.