Moving toward Equity through Embedded ELSI Ethnography

Abstract

This paper describes the unique values of, challenges within, and opportunities presented by embedded ELSI ethnography. Drawing from our six-year embedded ELSI study of the WISDOM (Women Informed to Screen Depending on Measures of Risk) trial, we present three examples of the variable ways we engaged with the WISDOM trial's scientific team. WISDOM is a preference-sensitive, pragmatic, randomized controlled trial of risk-based breast cancer screening informed by genomics. Our embedded ELSI approach included multiple modes of engagement: (a) Trial investigators sought bioethics expertise; for example, we were asked to consult on traditional bioethics topics such as consent as well as more complex questions about whether to implement a specific risk-assessment approach on only one race-defined group of trial participants. (b) As the ELSI investigators, we identified ethical concerns in issues that surfaced via ethnography and considered them in the Bioethics Working Group; for example, there were concerns about the implementation processes that the WISDOM team viewed as logistical challenges. (c) Our presence in WISDOM working group conversations and our expertise on classic social science topics, including race and gender, offered opportunities to engage on the spot with topics such as how to include transgender participants in a trial initially focused on “women's health”; through such engagement, the value of social science became clear to the trial investigators. The paper elaborates on the dynamic relationship between our ethnographic observations, the Bioethics Working Group discussions, and the contributions of each to our real-time ELSI interventions in these examples. The methods and experiences we describe here suggest modes of engagement that, in combination, have the potential to expand the role of ELSI to offer real-time intervention on issues related to equity, inclusion, and justice in genetic and genomic research.