“Being proactive, not reactive”: exploring perceptions of genetic testing among White, Latinx, and Pacific Islander Populations

Abstract

Genetic testing is becoming an integral part of healthcare, but evidence suggests that both race and ethnicity influence access to and utilization of genetic testing. Given this barrier, data are needed on the perceptions of genetic testing in racial and ethnic minority groups. The purpose of this study was to explore the perceptions of three types of genetic testing (genetic testing for adult-onset conditions, prenatal screening, and newborn screening) in a sample of US participants who identified as White, Pacific Islander, and Latinx (10 dyads from each group for 60 participants total). Data were collected through semi-structured dyadic interviews and assessed using thematic analysis. The major themes were knowledge as empowering, knowledge as stressful, and predictive nature of prenatal testing and newborn screening. Some differences were seen in themes by race and ethnicity. A sense of collective and familial health appeared to be a more important theme for Pacific Islander and Latinx participants compared to White participants. Adult-onset genetic testing was viewed variously across all groups with some noting how it may increase anxiety, particularly if the disease screened for was unable to be prevented with action. All three groups reported on the positives of prenatal testing and newborn screening yet often were confused on the differences between them. This study presents novel perceptions of genetic testing in participants from diverse communities across three types of genetic testing. Genetic healthcare providers should incorporate participants' perceptions, values, and beliefs into their counseling delivery as a way to engage with diverse communities.

Latinx attitudes, barriers, and experiences with genetic counseling and testing: A systematic review

“…Research in which Latinas express positive uncritical perspectives toward GC/GT may be influenced by sympatía , or a desire to maintain positive relationships and build rapport with researchers or medical staff, which could also play a role in GT acceptance (Ramirez et al, 2015 ). Consistent with our findings in Latinx populations, recent studies that examined racial and ethnic differences in attitudes and knowledge about GT underscored low background knowledge among non‐white participants and Latinx interest in using GT for family benefit but they do not elaborate on the role of medical context (Canedo et al, 2019 ; Chavez‐Yenter et al, 2021 ; Langford et al, 2012 ).…”

“…Several articles stated categorically that non‐white participants expressed more concerns about privacy than NHW (American Society of Human Genetics, 2020 ; Clayton et al, 2018 ), but our research highlights that Latinx patients sometimes report less expectation of privacy than NHW (indicating others had a right to know GT results) (Chavez‐Yenter et al, 2021 ; Singer et al, 2004 ; Suther & Kiros, 2009 ). Based on our review, researchers might anticipate different findings about Latinx genetic privacy concerns depending on whether questions interrogate perceived obligation to divulge family history or GT results to physicians or family members (Carmichael et al, 2017 ; Kinney et al, 2010 ; Singer et al, 2004 ; Suther & Kiros, 2009 ; Tucker et al, 2006 ), or fears of discriminatory treatment (Glenn et al, 2012 ; Hall et al, 2005 ; Hamilton et al, 2016 ; Sussner et al, 2013 ).…”

“…Based on our review, researchers might anticipate different findings about Latinx genetic privacy concerns depending on whether questions interrogate perceived obligation to divulge family history or GT results to physicians or family members (Carmichael et al, 2017 ; Kinney et al, 2010 ; Singer et al, 2004 ; Suther & Kiros, 2009 ; Tucker et al, 2006 ), or fears of discriminatory treatment (Glenn et al, 2012 ; Hall et al, 2005 ; Hamilton et al, 2016 ; Sussner et al, 2013 ). Many Latinx patients see GT collectivistically, as an empowering tool for families (Chavez‐Yenter et al, 2021 ), and they may be more prone than NHW patients to support providers sharing genetic information directly with family members (Kinney et al, 2010 ; MacDonald et al, 2008 ). Research should disambiguate aspects of genetic privacy, differentiating concerns about discrimination in the health sector from opinions about sharing of genetic information with providers and family members.…”

“…Older clinical summaries of GC for Latinx patients highlighted confusion with non‐directive approaches, challenges communicating across language and cultural differences, and mistrust born of persistent negative experiences, including racism, in healthcare settings (Penchaszadeh, 2001 ; Thorngren, 1990 ). Most GC/GT patient experience research has relied on populations of European descent, so less is known about the experience of racial and ethnic minorities (Canedo et al, 2019 ; Catz et al, 2005 ; Chavez‐Yenter et al, 2021 ).…”

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

“…In addition, the survey was only offered in English, and it will be critical for future studies to examine differences among Spanish-speaking Latina women. Examining the importance of variables such as subethnicity and acculturation will also be important for a fuller understanding of the influence of ethnicity on interest and acceptance of genetic testing ( Chavez-Yenter et al, 2021a ; Chavez-Yenter et al, 2021b ).…”