Communities underrepresented in genomic studies express mistrust and cynicism when presented narratives that frame genomics as positive and focus on its potential benefits, according to a new study in Human Genetics and Genomics Advances. Researchers from Wellcome Connecting Science, Genomics England, and the language strategy firm Maslansky + Partners conducted focus group studies that included 100 individuals of Black African, Black Caribbean, or Pakistani ancestries or of other ancestries from disadvantaged socio-economic backgrounds to gauge their thoughts on statements from researchers that center scientific or health benefits of participating in research. Participants said that the phrases used wrongly assume researchers have participants' trust, don't acknowledge past injustices or current inequalities, and are overly simplistic. "Our research has demonstrated that everyday talk about genomics currently, used by researchers and clinicians alike, has the potential to alienate already disengaged public audiences," co-author Anna Middleton from Wellcome Connecting Science and the University of Cambridge, says in a statement. She and her colleagues write that researchers "need to linguistically meet public audiences where they are at" and offer some possible new phrasing.
Positive Framing of Genetic Studies Can Spark Mistrust Among Underrepresented Groups
Aug 31, 2023