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

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ABSTRACT Environmental factors that influence disease 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 exposure to environmental pollutants, social stress, or lifestyle behaviors. The benefit or harm of these changes depends on the purpose of the gene and how the change alters genetic expression. Communication facilitate from genetic strategies that help people understand and use epigenetic information are needed to (1) translation o epigenetics research to clinical settings, (2) address potentially misleading information the mass media, and (3) prevent the propagation of harmful beliefs associated with epigenetics, such as determinism, essentialism, discrimination, racism, and stigma. Our objective is f to facilitate the translation process by developing epigenetic communication strategies that are understandable and meaningful to socio-demographically diverse audiences, and that minimize harmful beliefs (e.g., determinism). Thespecific aims will: (1)Determine how people come to understand and interpret epigenetics information; (2) Examine the ethical, legal, and social implications (ELSI) of epigenetics for (a) creating or minimizing harmful beliefs and (b) promoting or discouraging acceptance of using epigenetics in clinical settings; (3) identify strategies for communicating information about epigenetics in a way that fosters understanding of epigenetic concepts, minimizes harmful beliefs, and increases acceptance of using epigenetics in clinical settings; and (4) Determine how race, ethnicity, and formal education shape the results of Aims 1-3. 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-representative, population-based survey (N=1,870) and a full-factorial experiment to test communication strategies (N=1,954). The of non-Hispanic and participants translation about demographically marginalized public a sample for each phase, which includes members the general public will be stratified to be approximately equally divided by race and ethnicity (i.e., Hispanic, Black, non-Hispanic White, non-Hispanic Asian, non-Hispanic American Indian, Native Hawaiian, other Pacific Islander) and approximately equally divided by formal education (i.e., at least 50% of with no college experience. Our proposed research will overcome a critical barrier to the equitable of basic epigenetics research into clinical and public health practice: limited scientific knowledge how to communicate about epigenetics in way a that is understandable and meaningful to socio- diverse audiences, tha minimizes harmful beliefs, and that includes t he perspectives of populations. Furthermore, our findings could be used as a foundation for research that examines perceptions of other emerging genomics technologies. We will expand our impact further by developing toolkit for disseminating our discoveries. , t