Great strides are being made in identifying early signs that put people in a ?high risk state? for illnesses, enabling identification during what has been called a ?high risk state?. Individuals in a ?high-risk state? are starting to show signs of a disorder, but do not yet have the full disorder. At the same time, advances are being made in identifying genes associated with ?high-risk states?. How people interpret the increased genetic risk of developing the full disorder carries important consequences for how they choose to respond, which may range from fatalistic acceptance of the disorder to proactive preventative behavior. One way of framing genetic risk, ?genetic malleability?, stresses that genes confer a modifiable risk that may be turned on or off by risky or protective behavior, or by engaging in treatment. Specifically, the ?malleability? framing may promote personal efficacy, and hence improved treatment engagement, in potentially averting the expression of genes that induce a disorder. With the aim to encourage an active pro-health response, we seek to develop two tools to convey genetic risk information to youth and young adults identified as in a ?clinical high-risk state? (CHR) for psychosis. The two tools will consist of: 1) a clinician manual, designed to be used by non-genetic trained clinicians to communicate risk to CHR youth; 2) a high-impact, computerized tutorial (?AutoTutor?) that has been used to convey genetic risk for the BRCA gene for breast cancer. We assess primary outcomes of increased intent to promote treatment and healthy behaviors, and secondary outcomes of reduction in stigma. For each tool, participants will be conveyed hypothetical information proposing being identified as having a substantially elevated, genetically-malleable risk for developing psychosis. Development of a manual has the potential to guide clinical interactions among non-genetics trained clinicians with CHR youth, while an interactive, computer-based tool for CHR youth supports self-management. Understanding how this genetic framing may impact ?high risk? individuals? orientation to treatment is crucial because the ?high-risk? state is a juncture where preventive actions or early intervention may alter the illness trajectory itself. Because of the relatively large innovation involved in our project, we seek to establish initial acceptability, safety, and efficacy of each tool. We then test a nonrandomized, within-subject, pre- vs. post design by examining whether providing the ?genetic malleable? framing via each tool (n=27 CHR youth per tool, N=54 total) leads to improved outcomes. Because the CHR is prototypical of ?high-risk states? in that CHR has identifiable genetic and environmental/behavioral risk factors, these new translational tools could greatly facilitate dissemination of a beneficial genetic malleability framing to high-risk individuals. This study could be transformative in providing genetic information to maximize treatment engagement among those in high-risk states, thus contributing greatly to public health.

Public Health Relevance

While great strides are being made in identifying early signs that place people at a ?high risk state? for different illness conditions, at the same time, advances are being made in the identification of genes associated with ?high-risk states?. This study proposes to develop two innovative clinical tools that could greatly facilitate dissemination of a beneficial genetic malleability framing to high-risk youth in order to encourage increased treatment engagement and uptake of healthy behaviors. The impact of genetic information assumes special importance in the ?high-risk state? because achieving the best possible outcome is more likely if individuals actively choose to engage in beneficial treatment and health-promoting behaviors.

National Institute of Health (NIH)
National Human Genome Research Institute (NHGRI)
Exploratory/Developmental Grants (R21)
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Special Emphasis Panel (ZRG1)
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Boyer, Joy
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New York University
Social Sciences
Schools of Public Health
New York
United States
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