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Doctor of Philosophy (Ph.D.) Nursing
Background: In recent years, researchers have increasingly employed genetic testing as a means for understanding and treating diseases like Alzheimer disease, a common progressive disease affecting cognition and behavior. Genetic studies hold the potential for major breakthroughs in treatment of diseases like Alzheimer disease. However, with the increase in the use of genomewide association, microarray, and whole genome sequencing comes the potential for a greater number of incidental findings in genetic research—findings not central to the aim of a study but nonetheless informative about a participant’s health. Although many studies have documented the ethical implications around disclosure of such findings from the point of view of the researcher, fewer studies have examined the attitudes of genetic research participants to the disclosure of incidental findings. Purpose: It is critical that healthcare professionals and genetic researchers understand genetic research participants’ views so that they may appropriately discuss findings with participants and encourage applicable health measures. The purpose of this study was to assess the willingness of members of the general public who might participate in genetic research to request disclosure of incidental findings indicating a future Alzheimer diagnosis, and to apply the Theory of Reasoned Action to explain their intentions. The Theory of Reasoned Action posits that one can explain a person’s decision on the basis of his or her attitudes toward the object of the decision and subjective norms about that object. The potential for variability in people’s desire for awareness of genetic predispositions for Alzheimer disease makes Alzheimer disease an ideal case example for testing this model and improving our understanding of participants’ views toward incidental findings. ii Method: The researcher surveyed an online panel of volunteer participants who have been selected by pre-determined criteria from Survey Monkey to represent responses from adult American men and women asked about a hypothetical genetic testing situation in their lives. The researcher employed the Perceptions Regarding Investigational Screening for Memory in Primary Care (PRISM-PC) questionnaire to assess participants’ beliefs about Alzheimer disease and incidental findings. Results: The researcher employed one-way ANOVA and ordinal logistic regression to analyze the results. The results indicated that household income and level of education were significant predictors of participants’ attitudes toward Alzheimer screening. The two components of the Theory of Reasoned Action—the Attitudes and Subjective Norms subscales—significantly predicted participants’ likelihood to request incidental findings, confirming the hypothesis. Demographic differences did not demonstrate a predictive impact on the likelihood to request incidental findings. Conclusions: The research question in this study was “Does the Theory of Reasoned Action predict the likelihood to request results of incidental findings related to Alzheimer disease risk?” The results of the study confirmed the predictiveness of the Theory of Reasoned Action. Participants’ attitudes toward Alzheimer screening and subjective norms toward Alzheimer disease significantly predicted their likelihood to request incidental findings from the hypothetical genetic study. This finding provides important insight to nurses and other healthcare professionals treating patients with possible links to Alzheimer disease.
Forrest, Alisa M., "Does the Theory of Reasoned Action Inform the Willingness of Individuals Undergoing Genetic Testing to Seek Disclosure of Incidental Findings Related to the Risk for Alzheimer Disease?" (2019). Theses & Dissertations. 81.