Inclusive Research in Genomics and Disability: Findings from the “We Need to Talk” Project

Abstract Objectives Advances in genomics are reshaping how disability is understood, raising complex ethical, legal, and social issues for people with disabilities. This makes it essential to understand how people with disabilities perceive genomics and how they can be included in co-design approaches to genomics research. Methods The We Need to Talk project explored how people with disabilities, including those with intellectual and developmental disabilities, view the impacts of genomic technologies and their role in inclusive genomics research. This paper outlines how we involved people with intellectual disabilities in the project and what they shared with us. We used a co-design approach for the We Need to Talk project where people with different types of disabilities were included in the governance of the project as well as the design and implementation of the research. Surveys were developed in different formats to make them accessible (online with text reading and voice recording, plain-language videos, interviews with easy read information). Two face-to-face national roundtables were held as well. Results Key considerations for genomics researchers were identified by people with intellectual disability. These included the value they bring to genomics research, their desire to be active participants rather than merely research subjects, and the supports they need to engage in inclusive genomics research. Conclusions These findings are important to guide future inclusive research, policy, and implementation of genomics.