Extending the Disclosure Decision-Making Model to Fit The Genetic Disclosure Context: What Role Does Locus Of Control Play?

Theoretical Background and research questions/hypothesis: The decision to disclose one’s health status can be a particularly challenging process, but can yield social, physical and physiological benefits. Disclosing genetic information such as having a genetically-based alpha-1 antitrypsin deficiency (Alpha-1) can only heighten the experience since it means revealing both involuntary and absolute risk to genetic relatives.  Alpha-1 is a codominant autosomal disorder that can lead to serious liver disease in children and liver and/or lung disease in adults or other prominent conditions such as emphysema, COPD, asthma, and chronic bronchitis. Therefore, early diagnosis of Alpha-1 is advantageous in order to take preventative measures. Disclosure of a family history with Alpha-1 or one’s personal Alpha-1 diagnosis is particularly important since knowledge can facilitate genetic counseling and early detection in other relatives before chronic symptoms arise (Campos et al, 2005). The research uses the Disclosure Decision-Making Model (DD-MM; Greene, 2009) to predict what variables influence participants’ likelihood to disclose a hypothetical Alpha-1 diagnosis to genetic relatives. Due to the heavy importance of disclosing genetic information to others at risk, the policies surrounding this form of disclosure, and the stigma often associated with genetic conditions, in this context, there may be a difference between having the efficacy to disclose a risk message to a genetic relative and feeling in control of the decision (i.e., locus of control) to disclose it or not. This research extends DD-MM, then, by examining how a person’s locus of control predicts how people feel efficacy to and how much they expect to disclose about a hypothetical AATD diagnosis to genetic relatives. 

Methods:  Two hundred adults recruited from Amazon’s Mechanical Turk will complete an online questionnaire. The sample is limited to those who have not undergone genetic testing but are interested in it. After completing demographic and psychological questions, participants will be asked to imagine that they have undergone diagnostic testing and learned that they have the genetic mutation associated with AATD. They will then complete scales to measure DD-MM variables and locus of control, as well as to predict their likelihood of sharing their results with a genetic relative and how much efficacy they feel about the disclosure decision.

Results: Results will be tested with general linear modeling. 

Conclusions: This study could reveal that disclosure efficacy is a different concept and has a different purpose as compared to one’s locus of control in the disclosure decision making process. The findings will also show how well DD-MM extends to health disclosures in which the information also suggests that the listener is at risk for the health condition, which could be extended to other health conditions that differ in their risk for others (e.g., infectious diseases). 

Implications for research and/or practice:  Evidence that there may be other factors influencing the genetic disclosure decision making process, specifically one’s locus of control, is an important implication of the research. How one processes information and makes assessments about disclosure may be different depending on the diagnosis and level of risk involved.