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Published on: August 15, 2019
Uncertainty in the information provided during genetic counseling
F J van Zuuren1, E C van Schie, N K van Baaren
1University of Amsterdam, Dept. of Clinical Psychology, Netherlands. kp_Zuuren@macmail.psy.uva.nl
Genetic counseling often leaves clients with uncertainty due to incomplete genetic information. This study found that clients frequently receive inconclusive diagnoses and limited control options, contrasting with their need for clear answers.
Area of Science:
- Medical Genetics
- Genetic Counseling
Background:
- Clients pursue genetic counseling for informed decision-making and reassurance.
- Current genetic knowledge is often fragmentary, leading to inherent uncertainty.
Purpose of the Study:
- To analyze the predictability, controllability, and novelty of genetic information conveyed during counseling sessions.
- To assess the alignment between the uncertainty of genetic information and client needs.
Main Methods:
- Analysis of genetic information presented in 30 genetic counseling sessions.
- Evaluation of information based on predictability, controllability, and novelty.
Main Results:
- Clients commonly encountered inconclusive diagnoses and ambiguous disease severity.
- The chance of genetic disorders was often provided, but therapeutic or preventive control measures were minimal.
- Some clients received highly novel, unexpected findings.
Conclusions:
- The high degree of uncertainty in genetic information reflects the current state of the art.
- This inherent uncertainty in genetic counseling directly conflicts with client expectations and needs for clarity.
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