A Rare Family: Exploring Genetic Literacy in an Online Support Group
Academic Article
Overview
Additional Document Info
Other
View All
Overview
abstract
Healthy People 2020 and the Institute of Medicine (IOM) define health literacy as the degree to which individuals have the capacity to obtain, process and understand basic health information and services needed to make appropriate health decisions. Essential components of health literacy include oral and print literacy, numeracy, and cultural and conceptual knowledge; the latter is influenced by sociodemographic factors and cultural understandings and approaches to concepts such as healthcare. Genetic literacy, a form of health literacy, may be defined as the knowledge, skills and attitudes necessary to individual understanding of genetic information, and genetic-based health, behavior, technology and services, making it a vital component of sexual and reproductive decision-making. The current qualitative research study employed holistic-content and narrative analysis of secondary data (electronic or e-mail posts) from an online support group for individuals affected by a genetic disorder in order to to gain additional insights into specific psychosocial and environmental variables that affect individual genetic literacy, related perceptions of genetic risk, and sexual and reproductive decision-making. Findings from the study indicate that online health-related support groups can evolve into a socially-constructed family of individuals affected by specific disorders. Within this online family, members find others who can identify with their feelings and experiences. Like biological families of origin, this familial context may then exert particularly strong influences on members social and health decision-making via co-constructed cultural and conceptual knowledge of the disorder. Further qualitative research needs to be performed to understand the positive and negative impact that participation in a collective consciousness might have on individual genetic literacy necessary for making sensitive decisions such as those involved in sexual and reproductive health. Implications for education and counseling are discussed.
