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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.

Key Take Away Points

  • 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.
  • Findings from the study indicate that online health-related support groups can evolve into a socially-constructed “family” of individuals affected by specific disorders. 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.
  • When viewed through a scientific or medical lens, individuals with this cultural/conceptual knowledge may lack the genetic literacy necessary for informed and competent health decision-making.

Author Biography

Heather Honoré Goltz an Assistant Professor of Social Work at the University of Houston-Downtown, an Adjunct Assistant Professor of Infectious Diseases at Baylor College of Medicine, and a Research Investigator at the Michael E. DeBakey VA Medical Center. She has co-authored over two dozen scholarly publications and three book chapters on topics ranging from sexual health to cancer survivorship and clinical trials methodologies. Sandra Acosta is an Assistant Professor in the Department of Educational Psychology at Texas A&M University. Her research interests include: biliteracy and teacher instructional leadership—action research in PreK-12 general education settings. Recent publications include “Shared Values: Testing a Model of the Association Between Hong Kong Parents’ and Adolescents’ Perception of the General Value of Science and Scientific Literacy” in Educational Studies (2014).

Acknowledgements

The authors would like to thank colleagues, past and present, at the University of Houston-Downtown, Texas A&M University, the Michael E. DeBakey VAMC, and Baylor College of Medicine for previewing and providing comments on initial drafts of this manuscript. A special note of gratitude to Dr. Patricia Goodson, Dr. B.E. (Buzz) Pruitt, and Dr. M. Carolyn Clark for providing the academic support and resources that made this study possible.

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