The researchers analyzed data from a survey of 541 family members or patients diagnosed with neurofibromatosis, Marfan syndrome or Down syndrome. Participants were asked questions about the status of their diagnosis, beliefs on genetics, personal behavior, religious and social life, illness uncertainty and how they manage their uncertainty about living with the diagnosis or living with a family member who has had the diagnosis.
The researchers found respondents could be clustered into four groups based on how they understand the role genetics plays in health:
• Uncertain relativists are not sure what role personal behaviors, religious faith and social networks play in genetics and health.
• Personal control relativists tend to be more certain about how personal behavior affects genetics.
• Genetic determinists believe that only genes determine their health.
• Integrated relativists believe that behavior, faith and support can affect genetic expression.
The researchers concluded a patients’ uncertainty about their illness could affect the way they communicate about the condition. Understanding how people might respond to a health problem is crucial to planning communication strategies, they said.
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