Ethnic identity and engagement with genome sequencing research

Turbitt, E; Roberts, MC; Hollister, BM; Lewis, KL; Biesecker, LG; Klein, WMP

Ethnic identity and engagement with genome sequencing research

Turbitt, E

Roberts, MC Hollister, BM Lewis, KL Biesecker, LG Klein, WMP

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Publication Type:: Journal Article
Citation:: Genetics in Medicine, 2019, 21 (8), pp. 1735 - 1743
Issue Date:: 2019-08-01

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Field	Value	Language
dc.contributor.author	Turbitt, E https://orcid.org/0000-0002-6650-9702	en_US
dc.contributor.author	Roberts, MC	en_US
dc.contributor.author	Hollister, BM	en_US
dc.contributor.author	Lewis, KL	en_US
dc.contributor.author	Biesecker, LG	en_US
dc.contributor.author	Klein, WMP	en_US
dc.date.available	2018-12-05	en_US
dc.date.issued	2019-08-01	en_US
dc.identifier.citation	Genetics in Medicine, 2019, 21 (8), pp. 1735 - 1743	en_US
dc.identifier.issn	1098-3600	en_US
dc.identifier.uri	http://hdl.handle.net/10453/129818
dc.description.abstract	© 2018, American College of Medical Genetics and Genomics. 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% confidence interval: 0.29, 0.98, p < 0.001] and expected benefits from genomic research participation [b = 0.32, 95% confidence interval: 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 with 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.	en_US
dc.relation.ispartof	Genetics in Medicine	en_US
dc.relation.isbasedon	10.1038/s41436-018-0410-0	en_US
dc.subject.classification	Genetics & Heredity	en_US
dc.subject.mesh	Humans	en_US
dc.subject.mesh	Cohort Studies	en_US
dc.subject.mesh	Intention	en_US
dc.subject.mesh	Genome, Human	en_US
dc.subject.mesh	Adult	en_US
dc.subject.mesh	Aged	en_US
dc.subject.mesh	Middle Aged	en_US
dc.subject.mesh	Continental Population Groups	en_US
dc.subject.mesh	African Americans	en_US
dc.subject.mesh	Ethnic Groups	en_US
dc.subject.mesh	Female	en_US
dc.subject.mesh	Male	en_US
dc.subject.mesh	Surveys and Questionnaires	en_US
dc.subject.mesh	Whole Genome Sequencing	en_US
dc.title	Ethnic identity and engagement with genome sequencing research	en_US
dc.type	Journal Article
utslib.citation.volume	8	en_US
utslib.citation.volume	21	en_US
utslib.for	0604 Genetics	en_US
utslib.for	1103 Clinical Sciences	en_US
pubs.embargo.period	Not known	en_US
pubs.organisational-group	/University of Technology Sydney
pubs.organisational-group	/University of Technology Sydney/Graduate School of Health
utslib.copyright.status	closed_access
pubs.issue	8	en_US
pubs.publication-status	Published	en_US
pubs.volume	21	en_US

Abstract:

© 2018, American College of Medical Genetics and Genomics. 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% confidence interval: 0.29, 0.98, p < 0.001] and expected benefits from genomic research participation [b = 0.32, 95% confidence interval: 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 with 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.

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http://hdl.handle.net/10453/129818