Objectives: Advocacy for the equitable implementation of genomic medicine begins with researchers in the field of ethical, legal, and social implications (ELSI) of genomics understanding the preferences of underrepresented and minoritized populations. Increasingly, ELSI researchers have utilized stated preferences methodologies that are essential in exploring preference heterogeneity among subgroups. To that end, we will review the extent existing formal preference research considers preference heterogeneity in their analyses. Our objective is to improve understanding of 1) how often researchers study whether and how preferences differ by subgroup; and 2) what statistical methods are used to study preference heterogeneity. We updated a systematic literature review of discrete choice experiments and conjoint analysis studies on the topic of genetic testing conducted by Ozdemir and colleagues. All identified articles from our updated review and Ozdemir’s review will be considered in the data extraction.
Methods: We updated Ozdemir’s 2021 systematic review using PsycINFO, PubMed, CINAHL, Embase, and Web of Science from February 2021 to November 2023 using the same search queries of the original review. Of the 146 articles identified, 11 met the inclusion criteria.
Results: Of all 49 articles, 18 articles had diverse populations. We found that while preferences by subgroup were considered for income and religion, race and ethnicity and rural and urban status were not frequently analyzed. Many of the studies were conducted in the United States and researchers often used homogeneous populations. Researchers should aim to conduct stated preference research in populations that better reflect the demographic makeup of the US in order to guide policy decisions.
Author: Taylor Montgomery , Harvard Medical School and Harvard Pilgrim Health Care Institute
