Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease
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Critical questions arise about misunderstandings of genetics. We interviewed for 2 h each, 64 individuals who had or were at risk for Huntington’s disease (HD), breast cancer or Alpha-1 antitrypsin deficiency. These individuals revealed various misunderstandings that can affect coping, and testing, treatment and reproductive decisions. A therapeutic misconception about testing appeared: that testing would be helpful in and of itself. Many believed they could control genetic disorders (even HD), yet these beliefs were often incorrect, and could impede coping, testing, and treatment. Misunderstandings about statistics and genetics often fueled each other, and reflected denial, and desires for hope and control. Emotional needs can thus outweigh understandings of genetics and statistics, and providers’ input. Individuals often maintained non-scientific beliefs, though embarrassed by these. These data have implications for care, and public and professional education. Misunderstandings’ persistence, despite realization of their inaccuracy, suggests that providers need to address not just cognitive facts, but underlying emotional issues.
KeywordsHealth education Doctor-patient communication Decision-making Health benefits Genetic information Genetic testing Genetic counseling
This work was funded through a grant from the National Human Genome Research Institute (R01-HG002431-01). I would also like to thank Meghan Sweeney, Melissa Conley, Lisa Chin, and Sarah Dion for their assistance with the manuscript.
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