Investigating ELSI issues that may facilitate or impede clinical translation of epigenomic research

Washington University, Saint Louis MO

Investigators

Linked publications, trials & patents

Abstract

Environmental factors that increase or decrease disease risk may do so by chemically altering parts of the DNA that regulate gene expression. These modifications to the genetic code are referred to as “epigenetics.” Epigenetic changes can be acquired via a variety of exposures, including pollution and lifestyle behaviors. The benefit or harm of these changes depends on the purpose of the gene and how the change alters gene expression. Communication strategies that help people understand and use epigenetic information are needed to facilitate the translation of epigenetics research to clinical settings. Our objective is to facilitate the translation of basic epigenomics science into clinical and public health practice by developing epigenetic communication strategies that are understandable and useful to the public. The specific aims will: 1) Determine how people come to understand epigenetics information; (2) Examine how public perceptions of the benefits and risks of epigenetics research might facilitate or impede (a) understanding of epigenetics concepts and (b) acceptance of using epigenetic technologies in clinical settings; (3) identify strategies for communicating information about epigenetics in a way that increases understanding of epigenetic concepts and increases acceptance of using epigenetics in clinical settings; and (4) Evaluate the generalizability of the findings from Aims 1-3 to the U.S. population. We will use an exploratory sequential mixed methods design that includes one qualitative phase followed by two consecutive quantitative phases. The qualitative phase will include 20 focus groups (N=160 total, n=8 per group). The quantitative phases will include a nationally survey (N=1,870) and a full-factorial experiment (N=1,954). Our proposed research will overcome a critical barrier to the translation of basic epigenetics research into clinical and public health practice: limited scientific knowledge about how to communicate about epigenetics in way a that is understandable and useful to the public. Furthermore, our findings could be used as a foundation for research that communicates information about other emerging genomics technologies to the public. We will expand our impact further by developing a toolkit for disseminating our discoveries.