Misunderstandings Concerning Genetics Among Patients Confronting Genetic Disease
Open Access
- 29 May 2010
- journal article
- research article
- Published by Wiley in Journal of Genetic Counseling
- Vol. 19 (5), 430-446
- https://doi.org/10.1007/s10897-010-9307-z
Abstract
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.Keywords
Funding Information
- National Human Genome Research Institute (R01‐HG002431‐01)
This publication has 38 references indexed in Scilit:
- Views of Discrimination among Individuals Confronting Genetic DiseaseJournal of Genetic Counseling, 2010
- Australian Study on Public Knowledge of Human Genetics and HealthPublic Health Genomics, 2008
- The roles of family members, health care workers, and others in decision-making processes about genetic testing among individuals at risk for Huntington diseaseGenetics in Medicine, 2007
- The Effect of Experiential Knowledge on Construction of Risk Perception in Hereditary Breast/Ovarian CancerJournal of Genetic Counseling, 2005
- Lay Understanding of Familial Risk of Common Chronic Diseases: A Systematic Review and Synthesis of Qualitative ResearchAnnals of Family Medicine, 2004
- Lay people's understanding of and preference against the word ?mutation?American Journal of Medical Genetics, 2004
- Genetic Maps and Human Imaginations: The Limits of Science in Understanding Who We AreContemporary Sociology: A Journal of Reviews, 2001
- In search of cultural competence in psychotherapy and counseling.American Psychologist, 1998
- The Interpretation of Cultures: Selected Essays.Contemporary Sociology: A Journal of Reviews, 1975
- Judgment under Uncertainty: Heuristics and BiasesScience, 1974