Developing and translating participant and consent information for ancestry groups underrepresented in genomics research
Creators: name: Croy, Samantha
name: Terrill, Bronwyn
name: Shouly, Rafal
name: Penaia, Shenei
name: Amini, Liaqat
name: Asiata, Selesele Mafi
name: Benam, Mahnaz
name: Billimoria, Jessica
name: Cantsilieris, Stuart
name: Geronimo, Mary Ann
name: Gholizadeh, Mehdi
name: Hausia, Mele Kainga
name: He, Steven
name: Ingles, Jodie
name: Lam, Loudeen
name: Lenard, Aila
name: Malaeb, Safaa
name: Marginson, Melba
name: Mate, Joji
name: Nguyen, Tuan
name: Ojeda Amador, Nicolas
name: Pearce, Angela
name: Pedersen, Rune
name: Raicebe, Tepola
name: Richardson, Ebony
name: Sivaraj, Harshini
name: Truong, Huong Thi Mai
name: Ambegaokar, Maia
name: Young, Mary-Anne
name: MacArthur, Daniel G.
Publisher: name: Zenodo
Year: 2024
Subjects: genomics
participant information and consent
multicultural
ethnic minorities
culturally and linguistically diverse
translation

description: Many Australians who are not of European ancestry are underrepresented in genomics research and datasets including those of African, Asian, Middle Eastern and Oceanian descent. One barrier to the participation of culturally and linguistically diverse (CALD) Australians in medical research is the lack of accessible participant information and consent materials in community languages. In this report, we describe the development of a modular set of materials translated into ten languages to support Australian population and clinical genomics researchers to include greater numbers of participants from underrepresented groups in their research. 

We first undertook a landscape review of literature discussing culturally-appropriate and understandable consent materials in genomics. We also gathered examples of existing participant information materials available worldwide. These informed a draft of a plain English version of the participant information and consent materials that was critiqued as part of a consultation with genomics researchers and cross-cultural communication experts. Experts made terminology recommendations and noted the need to balance simple language with ethics committee requirements. These plain English materials were then translated into ten languages of communities for whom addressing underrepresentation in clinical and population genomics research was determined to be a priority: Arabic, Dari, Farsi, Fijian, Hazaragi, Samoan, Tagalog, Tongan, Urdu, and Vietnamese. 

Partnering with a cross-cultural communication agency who oversaw the translations, we gathered feedback from translators to gain insight into terminology and phrasing that presented translation challenges, as well as to understand the translation decisions they had made. With the translators, we conducted ten focus groups with bilingual speakers of the different language communities, asking for participants’ feedback on the plain English version, the content of the materials, and translations. Overall, community members appreciated the simple explanations but identified a key tension between length and depth in participant information 5 materials. Participants reinforced the need to consider approaches beyond the standard textual presentation. We then revised the plain English version and translations based on both translators’ and community members’ advice. 

Words were added to the glossary to facilitate translation, including the term ‘risk’, which had a much more negative meaning in several languages than intended. The materials were divided into segments to allow researchers to assemble their own research participant information and consent documents. The text was audio recorded, and both text and audio files will be provided to researchers in a modular format under a Creative Commons licence. We provide recommendations for the development and translation of participant and consent materials for ancestry groups underrepresented in genomics research. This project has reinforced the importance of community consultation in ensuring translations were accurately communicating researchers' intended messages. Our process highlighted the value of working closely with translators and consulting community members, and the need for innovation in effectively engaging underrepresented groups.