The NextGen Project is organising a roundtable discussion during the DIA Europe 2025 annual meeting to explore and assess genomic penetrance to diversity and bias in datasets. DIA is the Drug Information Organisation operating globally.

The Roundtable exercise will explore key issues related to penetrance and disease expression, particularly how the composition of individuals enrolled in disease-agnostic biobanks may influence genetic analyses. This composition can introduce significant biases, potentially leading to unintended consequences, such as limiting employment opportunities or access to insurance based on genetic risk assessments. A critical question to be discussed is whether genetic screening can mitigate such biases through inclusivity or, conversely, exacerbate them. Additionally, the discussion will examine whether the limited representation of European genomes affects the classification of novel genetic variants, both benign and pathogenic. Another focal point is the distinction between consent and the sharing of genetic health information, addressing how this challenge can be managed to balance the needs of clinical research with individual rights to privacy and personal health autonomy.

Here is the link to the DIA 2025 agenda and programme.