13 research outputs found
Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease
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 Alphaā1 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 providersā input. Individuals often maintained nonāscientific beliefs, though embarrassed by these. These data have implications for care, and public and professional education. Misunderstandingsā persistence, despite realization of their inaccuracy, suggests that providers need to address not just cognitive facts, but underlying emotional issues