Experiences of Latino Participants Receiving Neutral Genomic Screening Results: A Qualitative Study

Amal W. Cheema, Erica J. Sutton, Annika T. Beck, Idali Cuellar, Giovanna G. Moreno Garzon, Valentina Hernandez, Noralane M. Lindor, Gabriel Q. Shaibi, Iftikhar J. Kullo, Richard R. Sharp

Research output: Contribution to journalArticlepeer-review

Abstract

Purpose: The aim of the study was to characterize experiences of Latino participants receiving genomic screening results. Methods: Participants were recruited at a federally qualified health center in the USA. In-person, semi-structured interviews were conducted in either Spanish or English by a bilingual, bicultural interviewer. Questions focused on motivations for pursuing genomic sequencing, concerns about receiving genomic screening results, and perceived benefits of receiving genomic information. Interviews were audio-recorded, transcribed, and translated. Results: Fifty individuals completed an interview; 39 were conducted in Spanish. Participants described mixed motivations for pursuing genomic screening. Participants viewed the benefits of genomic screening in relation to not only their personal health but to the health of their families and their communities. Participants tended to have few concerns about genomic screening. Those concerns related to potential loss of privacy, misuses of genomic information, and the possibility of receiving distressing results. Some participants had misunderstandings about the scope of the test and the potential implications of their results. Most felt it was better to know about a genetic predisposition to disease than to remain uninformed. Participants felt that genomic screening was worthwhile. Discussion: This is one of the first studies to examine the experiences of Latino individuals receiving genomic screening results. Our results suggest that many Latino patients in the US see value in genomic screening and have limited concerns about its potential to cause harm. These results inform ongoing efforts to increase the availability of genomic medicine to underrepresented populations and add to our understanding of sociocultural drivers in the adoption of precision medicine.

Original languageEnglish (US)
Pages (from-to)44-53
Number of pages10
JournalPublic health genomics
Volume24
Issue number1-2
DOIs
StatePublished - Feb 2021

Keywords

  • Access to genetic services
  • Federally qualified health center
  • Genetic screening
  • Genetics research
  • Health disparities
  • Psychological and social impact

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Genetics(clinical)

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