Date of Award


Document Type


Degree Name

Doctor of Philosophy (PhD)

Legacy Department

Healthcare Genetics

Committee Member

Dr. Bonnie Holaday, Committee Co-Chair

Committee Member

Dr. Kelly Smith, Committee Co-Chair

Committee Member

Dr. James P. Evans

Committee Member

Dr. Janet Craig


This dissertation examines an individual’s perceived health status, and health values, as influences on self-initiated health action, specifically the pursuit of Direct-to-consumer (DTC) genome testing. Motivation for this independent health action may also have implications for other individual health behaviors, including the potential for positive changes that are lasting rather than temporary. Health Capability, the conceptual framework, supports individual health values and goals, ability to access valued healthcare services and includes measures of health status. However, Health Capability lacks an operationalized mapping of its major concepts. This dissertation proposes and evaluates an original concept mapping and relationships. An overview of this dissertation and components is presented in Chapter one. Chapter two addresses the genomics and healthcare landscape related to independent individual pursuit of Direct-to-consumer (DTC) genome testing. The Health Capability framework is initially presented in this chapter, together with the research hypotheses, targeted literature review of key concepts and the proposed concept mapping with relationships. Chapter three describes the Health Capability conceptual framework, its adaptation and extension for the dissertation and its potential for use in health promotion and prevention research. A systematic review of the literature on perceived health status is discussed in chapter four, as well as a targeted review of approaches to concept measurement and most commonly used instruments. Chapter Five presents the dissertation study. This research involves 1455 self-initiated Direct-to-consumer (DTC) genome testing users who represent a naturally occurring phenomenon and provide a unique population to study the impact of an individual’s subjective perceived health status, personal health values and health goals. Participants completed surveys as part of the Impact of Personal Genomics (PGen) study. These participants were classified into four mutually exclusive health status groups based on individual perception of health and a healthcare system perspective of health status (existence of a medical diagnosis). These groups were analyzed for the following: 1) discrepancies in health status, 2) differences in reasons for genome testing, perceived risk and health values, and 3) potential relationships among variables. Results confirmed discrepancies between individual and biomedical health status. One group may represent the “worried well”. Interest in health information was high (98–99%) across all groups, as was health value of genome test results. Two items distinguished all groups (interest in pharmacogenomics information and learning risk for other diseases (p < .001). When groups differed, perceived rather than biomedical health status was often involved, yet both factors demonstrated influences (variable dependent). Risk perception was moderately correlated (.301) with health status group, yet clearly does not equate with perceived health. Persons with medical diagnoses and self-rated not good health scored highest for items relating to immediate personal health and for family. Study findings are consistent with individual perceived health status and health values as significant factors influencing self-initiated health action (DTC genome testing). Chapter six further interprets research results as they relate to the hypotheses and to future research plans. Implications of the study results for revision and extension of the Health Capability concept mapping and framework are also discussed. These include: 1) supporting health status and values as principle concepts; 2) supporting addition of a measure of individual (subjective) perceived health status; 3) representing resources outside the healthcare system; and, 4) exploring the possibility of a personal need or value, as a “trigger” to action. These are areas of planned further research relevant to personalized healthcare, effective clinical practice, a collaborative healthcare model and meaningful policy development.



To view the content in your browser, please download Adobe Reader or, alternately,
you may Download the file to your hard drive.

NOTE: The latest versions of Adobe Reader do not support viewing PDF files within Firefox on Mac OS and if you are using a modern (Intel) Mac, there is no official plugin for viewing PDF files within the browser window.