Embedded Ethics Ethnography: Centering ELSI Investigations within Genomic Studies

• In Event: 1462 - Ethnography/Ethnographic Studies

Abstract

On November 25, 2018 a Chinese researcher name He Jiankui created headlines around the world when he announced that he had created the first CRISPR-edited babies. Scientists in genetics and genomics were shocked and even those leading the charge for CRISPR technology felt his alleged work had gone too far, too fast. This announcement highlighted that ethical, legal, social and policy implications (ELSI) research is vital in the rapidly-growing field of genetics and genomics. There is a need for new models of integrating ELSI research into ongoing and future genomic advancement. In this paper, we present one model, Embedded ELSI Ethnography, for conducting research that allows for both the study of complex genetics and genomics projects and ethical intervention into complex scientific inquiry. This paper will describe the opportunities and dilemmas our interdisciplinary team has encountered as we initiated an embedded study of a preference-sensitive, pragmatic clinical trial. The trial’s goal is to test a “risk-stratified” approach to breast cancer prevention and early detection on a large population. As genomics research expands to include large clinical studies, it is critical for social scientists to find innovative ways to be a central part of the research process. We will describe in detail both the methodology and the rationale for undertaking embedded work, and offer specific examples from our study. Embedded ethnographies allow researchers to: 1) observe challenges and issues that emerge in real time, 2) ascertain the views of both key stakeholders and study participants, 3) evaluate the impact of the study on key public policy and ethical concerns, and 4) contribute to answering ethical concerns as they arise, thus improving the implementation of pragmatic trials. We will share our experiences using this methodology, the challenges we have faced and our advice to future researchers engaging in this type of research.

Authors

• Jennifer Elyse James, University of California, San Francisco

• Barbara Koenig, University of California, San Francisco

• Leslie Riddle, University of California, San Francisco

• Galen Joseph, University of California, San Francisco