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

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.

Genetic counseling following direct‐to consumer genetic testing: Consumer perspectives

“…(2017) study about why DTC GT customers seek genetic counseling. Although there were study limitations (e.g., small number of interview participants who were asked to reflect on DTC GT a few years prior), findings are consistent with the prior DTC GT studies cited above, and interviewees’ key demographics are similar to more recent studies (Carroll et al, 2019). The perspectives of our interview participants contribute to the limited literature on this topic.…”

DNA testing information on YouTube: Inadequate advice can mislead and harm the public

“…As consumer genomic testing continues to evolve, and companies are offering more health-related tests, they move closer to providing tests that are on par with clinical laboratories (Feero & Wicklund, 2020 (Carroll et al, 2020;Feero & Wicklund, 2020).…”

Efforts of diversity and inclusion, cultural competency, and equity in the genetic counseling profession: A snapshot and reflection

“…As an ideal mediating service to various genetic advancements, genetic counseling services bridge emerging therapies and treatment guidelines to the lay public. Carroll et al (2019) in the workforce for almost three decades as gathered by the PSS, which remains the most widely and consistently distributed survey within the profession. The data show that while representation of Asian Americans/Pacific Islanders has steadily increased since 1994 that of Blacks/African Americans has remained stagnant at one% of the membership.…”

“…As an ideal mediating service to various genetic advancements, genetic counseling services bridge emerging therapies and treatment guidelines to the lay public. Carroll et al (2019) using a large dataset of Kaiser Permanente members found that racial and ethnic disparities persist in the use of clinical genetic services. Historical and current underrepresentation of certain populations stand to be exacerbated with new advancements in genetics.…”