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Understanding why negative genetic test results sometimes fail to reassure
Susan Michie1, Jonathan A Smith, Victoria Senior
1Department of Psychology, University College London, London, United Kingdom.
American Journal of Medical Genetics. Part A
|June 5, 2003
Summary
Individuals receiving negative genetic test results for familial adenomatous polyposis (FAP) still seek bowel screening due to persistent risk perceptions. Their understanding of genetics and test accuracy influences reassurance levels.
Area of Science:
- Genetics and Genetic Testing
- Medical Sociology
- Qualitative Health Research
Background:
- A subset of individuals with negative predictive genetic testing results desire ongoing bowel screening.
- This occurs despite a low general population risk (1:7500) and the aversive nature of screening for familial adenomatous polyposis (FAP).
- Understanding patient perceptions is crucial for effective risk communication and management.
Purpose of the Study:
- To investigate the perceptions of risk, illness, and genetic tests among individuals receiving negative predictive genetic testing results for FAP.
- To explore reasons why negative results do not always lead to reassurance.
- To identify potential targets for improving patient understanding and reducing unnecessary screening.
Main Methods:
- Qualitative study employing interpretative phenomenological analysis (IPA).
- Semi-structured interviews were conducted with nine individuals who received negative genetic test results for FAP.
- Analysis focused on understanding individual lived experiences and interpretations.
Main Results:
- Negative genetic test results did not always reassure individuals, who perceived ongoing personal and familial risk.
- Perceptions of FAP's genetic basis were complex: genetic status was seen as transient, and other causal factors were considered.
- Skepticism existed regarding the ability of blood-based genetic tests to accurately predict bowel-located diseases.
Conclusions:
- Patient reassurance after negative predictive genetic testing is influenced by their conceptualizations of the condition's etiology and the genetic test's predictive capabilities.
- Misconceptions about genetic causality and test limitations contribute to persistent risk perception and demand for screening.
- Interventions aimed at addressing these representations prior to testing may enhance reassurance and potentially reduce unnecessary medical surveillance.