Demographic differences in the utilization of clinical and direct-to-consumer genetic testing

J Genet Couns. 2020 Aug;29(4):634-643. doi: 10.1002/jgc4.1193. Epub 2019 Nov 20.

Abstract

Genetic testing has increased over the last decade due to growth in the number of clinical and direct-to-consumer (DTC) tests. However, there is uncertainty about how increased DTC genetic testing affects disparities. Between November 2017 and February 2018, a nationwide electronic survey on experiences with genetic testing was conducted among adult Kaiser Permanente members. Logistic regression was used to calculate adjusted odds ratios and 95% confidence intervals comparing receipt of clinical and DTC genetic testing between groups by race and ethnicity. Invitations were sent to 57,331 members, and 10,369 surveys were completed. 22% of respondents had received genetic testing (17% DTC and 5% provider-ordered). Non-Hispanic Whites were more likely than other groups to have clinical genetic testing but were similar to Hispanics and non-Hispanic Blacks in rates of DTC genetic testing. Among those who received any health-related genetic test, 10% reported abnormal results. Of these, non-Hispanic Whites were more likely than other racial/ethnic groups to speak to a medical professional about abnormal results. Results suggest that racial/ethnic disparities in the use of clinical genetic services persist. Additional research is needed to identify lessons learned from DTC genetic testing that may increase equity in the use of clinical genetic services.

Keywords: communication; direct-to-consumer genetic testing; disparities; genetic counseling; genetic testing.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Aged
  • Demography*
  • Direct-To-Consumer Screening and Testing*
  • Ethnicity
  • Female
  • Genetic Testing / statistics & numerical data*
  • Hispanic or Latino / statistics & numerical data
  • Humans
  • Logistic Models
  • Male
  • Middle Aged
  • Surveys and Questionnaires
  • United States
  • White People