Understanding Genomic Knowledge in Rural Appalachia: The West Virginia Genome Community Project

Authors

  • Jennifer A Mallow West Virginia University School of Nursing
  • Laurie A Theeke West Virginia University School of Nursing
  • Patricia Crawford WV Prevention Research Center Community Partnership Board
  • Elizabeth Prendergast West Virginia University Prevention Research Center
  • Chuck Conner
  • Tony Richards
  • Barbara McKown
  • Donna Bush
  • Donald Reed
  • Meagan E. Stabler
  • Jianjun Zhang
  • Geri Dino
  • Taura L. Barr

DOI:

https://doi.org/10.14574/ojrnhc.v16i1.381

Abstract

Purpose: Rural communities have limited knowledge about genetics and genomics and are also underrepresented in genomic education initiatives. The purpose of this project was to assess genomic and epigenetic knowledge and beliefs in rural West Virginia.

Sample: A total of 93 participants from three communities participated in focus groups and 68 participants completed a demographic survey. The age of the respondents ranged from 21 to 81 years. Most respondents had a household income of less than $40,000, were female and most were married, completed at least a HS/GED or some college education working either part-time or full-time.

Method: A Community Based Participatory Research process with focus groups and demographic questionnaires was used.

Findings: Most participants had a basic understanding of genetics and epigenetics, but not genomics. Participants reported not knowing much of their family history and that their elders did not discuss such information. If the conversations occurred, it was only during times of crisis or an illness event. Mental health and substance abuse are topics that are not discussed with family in this rural population.

Conclusions: Most of the efforts surrounding genetic/genomic understanding have focused on urban populations. This project is the first of its kind in West Virginia and has begun to lay the much needed infrastructure for developing educational initiatives and extending genomic research projects into our rural Appalachian communities.  By empowering the public with education, regarding the influential role genetics, genomics, and epigenetics have on their health, we can begin to tackle the complex task of initiating behavior changes that will promote the health and well-being of individuals, families and communities.

Keywords: Rural; genetics; genomics;  focus groups: Community Based Participatory Research

DOI:  http://dx.doi.org/10.14574/ojrnhc.v16i1.381

Author Biographies

Jennifer A Mallow, West Virginia University School of Nursing

Robert Wood Johnson Foundation Nurse Faculty Scholar

WV Clinical & Translational Institute Scholar

Assistant Professor

 

Laurie A Theeke, West Virginia University School of Nursing

Associate Professor, WVU School of NursingClinical Associate Professor, WVU School of MedicineRobert Wood Johnson Nurse Faculty Scholar AlumniAmerican Nurses Foundation Scholar

Chuck Conner

WV Prevention Research Center Community Partnership Board

Tony Richards

WV Prevention Research Center Community Partnership Board

Barbara McKown

WV Prevention Research Center Community Partnership Board

Donna Bush

WV Prevention Research Center Community Partnership Board

Donald Reed

WV Prevention Research Center Community Partnership Board

Meagan E. Stabler

West Virginia University Public Health

West Virginia University Prevention Research Center

Jianjun Zhang

West Virginia University Prevention Research Center

Geri Dino

West Virginia University Public Health

West Virginia University Prevention Research Center

West Virginia Clinical and Translational Science Institute

Taura L. Barr

Robert Wood Johnson Foundation Nurse Faculty Scholar

Assistant Professor

Downloads

Published

2015-09-12

Issue

Section

Articles