The Influence of Familial Obligation and Social Support Motives in Decisions to Disclose Genetic Test Results

Open Access
Author:
Greenberg, Marisa Samantha
Graduate Program:
Communication Arts and Sciences
Degree:
Master of Arts
Document Type:
Master Thesis
Date of Defense:
March 05, 2014
Committee Members:
  • Rachel Annette Smith, Thesis Advisor
Keywords:
  • disclosure
  • decision-making
  • familial obligation
  • genetics
  • motives
Abstract:
Genetics differs from other branches of medicine because of the omnipresent and substantial role familial obligation plays throughout the entire genetic testing and disclosure decision-making process. Genetic information may be considered unique from other kinds of health information because it may reveal personal information about one’s likelihood of certain medical conditions and information about one’s genetic relatives (Annas, Glantz, & Roche, 1995). This thesis uses the disclosure decision-making model (DD-MM, Greene, 2009) as the framework to investigate the factors that predict young adults’ decision to disclose genetic test results to a family member. Notably, the DD-MM has never been tested with genetic disclosures. Further, I challenge the assumptions in the DD-MM (and other existing models of decision disclosures) that disclosures are driven solely by self-interested motives, which is predominantly considered as the desire to seek social support. I propose that familial obligation also motivates disclosure, and investigate how a person’s reason for disclosure—wanting social support versus familial obligation due to risk relevance— affects the disclosure decision-making process. One hundred seventy-three (N =173) young adults were recruited to report on their hypothetical disclosure experience regarding the genetic health condition, alpha-1 antitrypsin deficiency (AATD). Participants were asked to imagine that they had undergone diagnostic testing and learned that they had a genetic mutation associated with AATD. They were then asked to specify a family member to refer to when completing the scales to measure DD-MM variables, which are used to predict their likelihood of sharing their results with a genetic relative. Participants were asked to report on the degree to which their disclosure decision is motivated by social support and familial obligation. Results indicate that the DD-MM translates to the genetic context and significantly predicts disclosure likelihood. Specific key mechanisms (i.e., a more serious prognosis and more anticipated instrumental support) were significant factors determining disclosure likelihood in the full model, but changed when sub-samples were created based on motive for disclosure. Results show familial obligation is present as a reason for disclosure and that social support does not fully explain the results of the DD-MM.