Quantitative researchers studying the Ethical, Legal, and Social Implications (ELSI) of genetics and genomics commonly employ survey methods. Researchers typically include novel survey items developed to answer specific research questions, either alone or in combination with validated instruments used to assess relevant psychosocial constructs. While attitudinal and outcome data are integral to ELSI research, understanding patient, clinician, and public preferences can be equally important to guide implementation of genomic medicine into clinical care. Stated preference methods, such as discrete choice experiments and best-worst scaling, are survey-based approaches that allow researchers to quantify trade-offs between benefits and harms of a given intervention by asking respondents to make choices between two experimentally manipulated options. One example is asking respondents to choose between two hypothetical genetic tests that vary by levels of test attributes, such as diagnostic yield, privacy protections, and out-of-pocket cost. We argue that the field of ELSI research can benefit from adoption of stated preference methods that are commonly used in other fields, such as health economics. Specifically, we will explore 1) the relevance of stated preference methods to ELSI research; 2) the potential value of stated preference data to the ELSI field; and 3) considerations for ELSI researchers when deciding whether and how to implement stated preference surveys. Appropriate adoption of stated preference methods in ELSI research, through interdisciplinary collaboration with researchers trained in these methods, will advance quantitative social science research regarding the implementation of genomic medicine and other advanced technologies.
Authors: Taylor Montgomery, Harvard Medical School and Harvard Pilgrim Health Care Institute; Madison Hickingbotham, Harvard Medical School and Harvard Pilgrim Health Care Institute; Nicole Pippard, University of California San Diego; David Veenstra, University of Washington; Stacey Pereira, Baylor College of Medicine; Amy L. McGuire, Baylor College of Medicine; Christi Guerrini, Baylor College of Medicine; Cinnamon S. Bloss; University of California San Diego; Hadley Smith, Harvard Medical School and Harvard Pilgrim Health Care Institute
