Preferences for genetic testing among populations underrepresented in genomic research: a systematic review.

Abstract

Equitable implementation of genomic medicine requires understanding preferences of diverse populations. Stated preference methods, such as discrete choice experiments (DCEs) and conjoint analyses, allow empirical evaluation of whether and how preferences for aspects of genomic medicine tests and services differ according to demographic characteristics. We aimed to understand the extent to which stated preference research in genomic medicine includes respondents that are population representative and evidence regarding preference heterogeneity by race and ethnicity. We conducted a systematic review of the stated preference literature in genomic medicine. We searched Web of Science, CINAHL, PsycINFO, PubMed, Embase, Cochrane Library, and SCOPUS for articles published from February 2021 to November 2023, extending a previously published systematic review. We extracted information on whether demographic characteristics of respondents were reported, whether investigators tested for preference heterogeneity based on race and ethnicity, and whether preference heterogeneity by race and ethnicity was identified. We identified 138 newly published records in addition to the 38 articles included in the original review. In total, we included 18 articles that reported participants' race or ethnicity. Eight articles explicitly analyzed preferences by race and ethnicity, and preference heterogeneity was identified in two. Stated preference research in genomic medicine often does not include population representative samples, and preference heterogeneity is not frequently analyzed according to race and ethnicity. Improving the representativeness of respondent populations, which allows for better understanding of whether and how preferences may differ by population subgroups, is important to guide policy and implementation decisions in genomic medicine.