Ethnic identity and engagement with genome sequencing research

Abstract

Purpose. We examined the role of ethnic identity (which measures the degree to which individuals identify with their ethnic group) in beliefs about, and intentions to learn, genomic results. Methods. A longitudinal cohort was recruited to implement genome sequencing among healthy participants self-identifying as African, African-American, or Afro-Caribbean, 40–65 years old ( n =408). Before receiving genomic results, participants completed a survey assessing social and behavioral constructs related to health, genomics, and ethnic identity. Results. Ethnic identity was positively correlated with perceived value of genomic results and expected benefits from genomic research participation. Among participants with stronger ethnic identity, cognitive beliefs [perceived value of results ( b =0.63, 95% CI: 0.29, 0.98, p <0.001) and expected benefits from genomic research participation ( b =0.32, 95% CI: 0.12, 0.53, p =0.002)] were associated with intentions to receive results. Among those with weaker ethnic identity, there was no such association. Conclusion. Individuals with stronger ethnic identity seem to attend more to cognitive beliefs such as the value of genomic results when deliberating receipt of results compared to those with weaker ethnic identity. Understanding ethnic identity variation and its influence on genome sequencing perceptions and intentions can inform future research opportunities using ethnic identity to explore specific practical, clinical questions.

Interest in Cancer Predisposition Testing and Carrier Screening Offered as Part of Routine Healthcare Among an Ethnically Diverse Sample of Young Women

“…We also found many similarities in predictors of interest, such as the importance of worry about genetic risks and genetic knowledge in both strata. These findings suggest the importance of addressing provider- and system-level barriers that may be driving lack of access to and uptake of genetic testing among interested Latina women ( Kaphingst et al, 2015 ; Hay et al, 2019 ; Turbitt et al, 2019 ). We also found that perceived importance of different types of genetic information varied by ethnicity.…”

“…There has been limited research on the access and use of genetic technologies among diverse patients ( Canedo et al, 2019 ; Kaphingst et al, 2019 ), particularly with Latinx patients ( Canedo et al, 2020 ; Chavez-yenter et al, 2021a ). For example, people from racial and ethnic minority groups are often interested in testing ( Kaphingst et al, 2015 ; Hay et al, 2019 ; Turbitt et al, 2019 ), but have lower access to and use of cancer genetic services in the US ( Hall and Olopade, 2005 ; Hall and Olopade, 2006 ; Fisher et al, 2019 ), even when cost barriers are minimized ( Alford et al, 2011 ). These disparities have been linked to both individual-level (e.g., lower knowledge) ( Singer et al, 2004 ; Pagan et al, 2009 ; Kinney et al, 2010 ; Bloss et al, 2018 ; Canedo et al, 2019 ) and system-level factors (e.g., unmet needs for discussion of testing with providers) ( Peters et al, 2004 ; Singer et al, 2004 ; Jagsi et al, 2015 ; Kaphingst and Goodman, 2016 ; Roberts et al, 2019 ; Southwick et al, 2020 ).…”

Human Genome as an Object of Interdisciplinary Socio-Humanitarian Research and a System of Appropriate Methodological Means

“…As a result, it was found that people with stronger ethnic identities (Afro-Caribbean) pay more attention to cognitive beliefs, such as the value of genome results, when considering results, compared to people with weaker ethnic identities [24].…”

Exploring African American community perspectives about genomic medicine research: A literature review

“…African American health community leader engagement is needed to determine strategies to overcome African American community concerns about genomic medicine research and help ensure that genomic medicine does not become an avenue to further exacerbate health disparities in the African American population. Given recent findings by Turbitt et al 14 and Buseh et al, 18 future work should determine whether descriptive factors (e.g. age, immigrant status, and ethnic identity) that fall within the context of affiliation with Africa and/or African diaspora regions might influence NBNA members' participation in genomic medicine research or serve as transnational roadblocks for delivering genomic healthcare.…”

“…A recent study was conducted to determine whether ethnic identity might influence beliefs about, and intentions to learn, genomic results. 14 The researchers found that among 408 healthy participants between the ages of 40 and 65 years who self-identified as African, African American, or Afro-Caribbean, two factors were significantly correlated with an intent to receive genomic testing results among study participants who held a strong ethnic identity (cognitive beliefs (p < 0.001) and the expectation to benefit from genomic research participation (p < 0.002)). A recent qualitative study involving in-depth interviews with 38 Black African adult immigrants also found that sociocultural underpinnings of African immigrants, or beliefs and customs that differ from Western conceptions of medicine and health, also serve as barriers and facilitators to African immigrant participation in genomic medicine research.…”