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New Global Genomics Insights report: Creating a more equitable genomics ecosystem 

Public Policy Project’s latest Global Genomics Insights highlight the need to re-evaluate how genomics researchers, industry, and other professionals engage with communities in a way that fosters trust; in addition to looking at how genomics professionals engage with policymakers and the role of international bodies in solidifying collaboration on genomics.
Global Genomics Insights
  • Equity in global genomics relies on how those working on genomics engage with participants in genomics research. 
  • The integration of genomics into health systems requires political willingness and adaptive strategies from the genomics sector to create entry-points with policymakers. 
  • The lack of global standards around interoperability hampers the ability of national genomics programmes to truly develop collaborative transnational approaches to programme development. 

Download the report here.


The report highlights trust as a critical aspect of advancing genomics equitably.  This not only dealt with how communities view industry but also with how the genomics community – researchers, academia, and other experts – engage with Indigenous Communities and underserved populations.  

In terms of industry, the report highlights that transparency and acknowledgement of and commitment to address past wrongs are key in building trust with potential participants in genomic research. However, the report notes that the most critical aspect in building trust is that communities are treated with respect within research.

It is essential inevitable power imbalances between those conducting research and those participating be taken into account throughout genomics research. This will help enable participants to retain control of benefits gained through any research utilising their genomic data.

The report argues that engagement from the genomics sector with policymakers cannot be a one-size-fits-all approach. Health systems are not organised in the same way around the world and what works best in one context is not guaranteed to work in another. The priorities of policymakers also vary, and the report highlights that this must be taken into account when seeking to build engagement strategies. However, while policy approaches must be adaptive to each context, there are shared lessons and challenges in how different programmes have engaged with policymakers that can still offer overarching guidance towards developing genomics ecosystems. 

Collaboration in genomics between differing national programmes is crucial in advancing genomics on a global level. However, the report notes that there are no existing standards towards how programmes should be developed. This means that many genomics programmes vary heavily in how they develop and limit opportunities for collaboration with other programmes. The report highlights the ongoing work of international organisations to rectify this but notes that there is more that needs to be done to better align genomics programming.  

Commenting on the report Kate Orviss, Senior Advisor on Global Genomics at PPP and Chair of the Global Genomics Programme said: “We are delighted that we were able to hear perspectives from Indigenous Communities, underserved communities and those operating in jurisdictions which are either at the very beginning of their genomics journey or are struggling to understand how to begin”.

Participants to the roundtables have illustrated the role of the report in advancing policy discussions within their own country, with one participant from a developing genomics ecosystem stating that “[the Genomics Roundtable Series] opened up perspective on the movements” around genomics in their country.

One participant to the roundtables stated that “the work Public Policy Projects is doing, particularly in the field of genomics and health policy, is critical. The Global Genomics Programme’s efforts to bridge the gap between the Global South and North, and its focus on addressing health inequalities, resonate deeply with my professional pursuits and values, as well as research”.

Public Policy Projects would like to thank Australian Genomics, Avellino Labs, Genomics England, NIHR Bioresource, Pfizer the Qatar Genome Programme, Variant Bio the Wellcome Sanger Institute and Zetta Genomics for providing overall sponsorship of this programme of work. Public Policy Projects has retained full editorial control throughout.

Download the report here.


Key Insights 

  1. Community Engagement – and issues of power, control and respect – must be considered from the outset in genomics. Communities should be seen and treated as “participants in” not “objects of” research and crucially this means having an active role in research design, oversights, analysis and the equitable dissemination of benefits and outcomes.  
  2. To realise the full potential of genomics it needs to move from pure research into implementation in a healthcare system. Achieving this requires the ability to share insights, experiences and credible health economic modelling, not just data.  
  3. Integration of genomics into healthcare settings is very non-standard as there are no standards of interoperability. A lack of standardisation creates a fragmented operating environment, both globally and within territories, which could compromise or diminish the collaborative sense of genomics and what it is going to be able to achieve. 
  4. Building trust with Industry (recognising that this is not one homogenous whole) is distinctly more difficult than simply generating engagement and this is a challenge globally, although for different reasons. Systematic inequality or inequitable practices – past or otherwise – plague the relationship between public trust and industry. Trust is hard to build where there is a limited acknowledgement of where harm has been committed.  
  5. The development of genomics globally is not synchronised with workforce development, political willingness, engagement of communities or populations or economic resources of countries. Engagement with policymakers, politicians and health system leaders requires a recognition that one size will not fit all and that strategies to develop genomics must be tailored to the requirements of individual health systems and the needs of local populations.  
  6. Indigenous Governance needs to begin and end with Indigenous Peoples. The unique perspective of Indigenous Peoples must be acknowledged on a systematic level by those engaging with Indigenous Communities such as researchers and institutions and all engagement should be rooted in partnership. 
  7. Stakeholders and interested parties in the Global North often do not understand the deep distrust of industry and the memory of dispossession and unfair treatment. These memories still resonate today in developing countries that are setting their sovereign rights of access.  
  8. Health systems need to create culturally safe pathways for Indigenous and other minority groups that allow people to enter mainstream genetic health services with confidence. Systematic racism and inequalities prevalent across healthcare systems will continue to be a major barrier to engagement if not addressed.  

For more information on PPP’s Global Genomics Programme, please write to seve.loudon@publicpolicyprojects.com.

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