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Increasing access to individualized medicine: a matched-cohort study examining Latino participant experiences of genomic screening

Abstract

Purpose

Multiple efforts are underway to increase the inclusion of racial minority participants in genomic research and new forms of individualized medicine. These efforts should include studies that characterize how individuals from minority communities experience genomic medicine in diverse health-care settings and how they integrate genetic knowledge into their understandings of health-care needs.

Methods

As part of a large, multisite genomic sequencing study, we surveyed individuals to assess their decision to pursue genomic risk evaluation. Participants included Latino patients recruited at Mountain Park Health Center, a Federally Qualified Health Center in Phoenix, Arizona, and non-Latino patients recruited at a large academic medical center (Mayo Clinic in Rochester, MN). Both groups agreed to receive individualized genomic risk assessments.

Results

Comparisons between cohorts showed that Latino respondents had lower levels of decisional conflict about pursuing genomic screening but generally scored lower on genetic knowledge. Latino respondents were also more likely to have concerns about the misuse of genomic information, despite both groups having similar views about the value of genomic risk evaluation.

Conclusion

Our results highlight the importance of evaluating sociocultural factors that influence minority patient engagement with genomic medicine in diverse health-care settings.

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Data availability

Survey data may be made available on a case by case basis by contacting the principal investigator of the study.

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Acknowledgements

The authors acknowledge the contributions of the late Carmen Radecki Breitkopf to this work. This study was supported by a grant from the US National Institutes of Health (U01 HG006379) and by the Mayo Clinic Center for Individualized Medicine.

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Affiliations

Authors

Contributions

Conceptualization: J.E.P., G.Q.S., E.J.S., R.R.S. Formal analysis: J.E.P., A.L., J.O., R.R.S. Funding acquisition: I.J.K., R.R.S. Methodology: J.E.P., G.Q.S., A.L., J.O., E.J.S., R.R.S. Project administration: J.E.P. Supervision: G.Q.S., V.H., N.M.L., D.S., I.J.K., R.R.S. Visualization: J.E.P. Writing—original draft: J.E.P. Writing—review & editing: G.Q.S., A.L., J.O., I.C., E.J.S., V.H., N.M.L., D.S., I.J.K., R.R.S.

Corresponding author

Correspondence to Richard R. Sharp.

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Competing interests

The authors declare no competing interests.

Ethics declaration

This survey study was embedded in two parent genomic sequencing studies, each of which was reviewed and approved by the Mayo Clinic Institutional Review Board (#15–005013 and #16-004342). Written informed consent was obtained for all participants.

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Pacyna, J.E., Shaibi, G.Q., Lee, A. et al. Increasing access to individualized medicine: a matched-cohort study examining Latino participant experiences of genomic screening. Genet Med 23, 934–941 (2021). https://doi.org/10.1038/s41436-020-01079-5

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