Webinar recap: Representation Matters: Why equitable access & community engagement are critical in genetic research

representation webinar

This webinar, hosted by Sano Genetics Partnership Lead Lindsey Wahlstrom-Edwards and featuring representatives from COUCH Health, Lupus Research Alliance, and Acclinate, highlighted the importance of equitable access as well as community and patient engagement in precision medicine. The discussion centered on various user research topics and methods, including how to evaluate user feedback effectively and the importance of understanding user needs.

You can watch the webinar below or here; we've also included a brief summary for easy reference.

About the speakers

Lindsey Wahlstrom-Edwards-1

Lindsey Wahlstrom-Edwards

Lindsey Wahlstrom-Edwards is the Partnerships Lead at Sano Genetics, a company that helps patient organisations, population genomics programs, and pharma to revolutionise the research participation experience.

Natasha Ratcliffe

Natasha Ratcliffe

Natasha Ratcliffe is the Director of Community Engagement and Partnerships at COUCH Health, a creative health engagement agency with a mission to elevate the voice of patients and communities. She is an expert in making sure patients have a say in research and helping them partner with sponsors and researchers to support health engagement and more inclusive research.

Ebony Scott

Ebony Scott

Ebony Scott is the Director of Health Equity at Lupus Research Alliance. She is dedicated to advancing lupus research and finding a cure through patient advocacy and engagement. She is focused on engaging underrepresented minorities in lupus research.

Del Smith, PhD-1

Del Smith, PhD

Del Smith is the Co-founder and CEO of Acclinate, a company that works to improve health equity by enabling inclusive research. Acclinate helps pharmaceutical companies and healthcare organisations ensure that they adequately access and engage communities of colour, resulting in more inclusive research.


Highlights from the webinar

What are the consequences of a lack of representation in genetic research?

One of the defining characteristics of genetic research is the development of precision medicine. The science that's been used to inform new treatments that are coming out in the oncology space can also be applied to different health conditions, such as Parkinson's disease, Alzheimer's, lupus, and more. It's crucial to make access to genetic testing acceptable and equitable to ensure that everyone is covered.

However, a significant challenge in genetic research is the lack of representation. About 81 percent of people who had participated in genome-wide studies were White Europeans, which represent only 16 percent of the global population. When we're looking at the genes that are associated with different health conditions, we're only taking into account a small percentage of the population. This lack of representation can exacerbate existing health disparities and increase the risk of misdiagnosis and mistreatment.

What are other barriers that prevent access to genetic research?

Addressing underrepresentation in genetic research is critical to increasing health equity, and to avoiding increasing health disparities. Of course, it's important to understand that genetics are not the only factor that affects health outcomes; we need to consider various factors, such as gene-environment interactions, social determinants, and economic models.

Barriers to clinical trials are typically characterised as access, trust, and awareness, and in this webinar, the panelists agreed with this categorisation, but emphasised precision medicine research costs in particular. Genetic testing can cost thousands of dollars, which can prevent individuals from getting the right treatment for their condition. The lack of access to basic healthcare makes genetic testing a lower priority for some communities. It's essential to explain the benefits of genetic testing and ask communities what benefits they would like to see from this research.


Representation matters in genetic research, and it's crucial to address underrepresentation to increase health equity. We need to consider various factors that affect health outcomes, including genetics, economics, and social determinants of health. The economic aspect really comes into play with regard to genetic testing, and we need to ensure that the costs are driven by the patient's needs and outcomes. Finally, it's essential to educate communities on the benefits of genetic testing and truly understand their motivation and goals when taking part in research. By understanding the user's needs and engaging with communities, we can ensure equitable access to precision medicine.

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