Racial minority group interest in direct-to-consumer genetic testing: findings from the PGen study
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ORIGINAL ARTICLE
Racial minority group interest in direct-to-consumer genetic testing: findings from the PGen study Latrice Landry 1,2,3 & Daiva Elena Nielsen 4,2,5 & Deanna Alexis Carere 6 & J. Scott Roberts 7 & Robert C. Green 4,2,5,3,8 & the PGen Study Group
Received: 17 May 2017 / Accepted: 21 August 2017 # Springer-Verlag GmbH Germany 2017
Abstract There is little information regarding direct-toconsumer (DTC) personal genetic testing (PGT) in nonWhite racial minorities. Using a web-based survey, we compared the pretest interests and attitudes toward DTC-PGT of racial minority and White DTC-PGT customers of 23andMe and Pathway Genomics using chi-square tests and multinomial regression. Data were available for 1487 participants (1389 White, 44 Black, and 54 Asian). Survey responses were similar across racial groups, although a greater proportion of Blacks compared to Whites reported being Bvery interested^ in genetic information related to traits (91.9 vs. 70.8%, p = 0.009). A greater proportion of Asians compared to Whites reported that a Bvery important^ consideration for pursuing DTC-PGT was limited information about their family health history (58.0 vs. 37.5%, p = 0.002). While a number of significant differences between groups were observed in unadjusted analyses, they did not remain significant after adjustment. This study provides a preliminary view of the interests
for purchasing DTC-PGT among customers with racial minority backgrounds. Keywords Direct-to-consumer . Genetic testing . Racial minorities . Interests and attitudes . Blacks . Asians
Introduction Advances in knowledge and technology have led to an increased availability and awareness of genetic testing (Roberts and Ostergren 2013). There are two main access points for genetic testing: (1) clinician-facilitated medical testing and (2) direct-to-consumer (DTC) personal genetic testing (PGT). Despite the growing availability of both, research suggests that awareness, use, and interest in medical genetic testing are lower among American racial minority groups (Mai et al. 2014). Factors suggested as possible reasons for lower
Latrice Landry and Daiva Elena Nielsen contributed equally to the manuscript. This article is part of the Topical Collection on Inclusion of Diverse Populations In Genomics Research and Health Services: A Scientific and Health Equity Imperative See list of PGen Study members in the Acknowledgements section * Robert C. Green [email protected] 1
Department of Pathology, Brigham and Women’s Hospital, Boston, MA, USA
2
Harvard Medical School, Boston, MA, USA
3
Partners Personalized Medicine, Boston, MA, USA
4
Division of Genetics, Department of Medicine, Brigham and Women’s Hospital, Boston, MA, USA
5
Broad Institute of MIT and Harvard, Cambridge, MA, USA
6
Department of Pathology and Molecular Medicine, McMaster University, Hamilton, ON, Canada
7
Department of Health Behavior and Health Education, University of Michigan School of Public Health, Ann Arbor, MI, USA
8
Partners Personalized Medicine, Brigha
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