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Information-seeking behaviour and psycho-social interactions during the genetic testing process.
C Cypowyj1, F Eisinger, M Morin
1Epidemiology and Social Sciences Unit, INSERM U379, Marseille, France.
Community Genetics
|August 28, 2004
Summary
Few women seek extra information on BRCA genetic testing beyond consultations. Those who do report higher satisfaction and involve family more in decisions, highlighting the geneticist's crucial role.
Area of Science:
- Medical Genetics
- Cancer Genetics
- Behavioral Science
Background:
- Understanding information-seeking behavior (ISB) is crucial for effective patient counseling in cancer genetics.
- BRCA testing decisions involve complex psychosocial factors and information needs.
- Limited research exists on complementary information-seeking outside formal genetic consultations.
Purpose of the Study:
- To investigate the ISB of women considering BRCA testing.
- To identify factors influencing ISB regarding genetic testing.
- To explore the role of social networks in decision-making for BRCA testing.
Main Methods:
- Prospective cohort study of women attending a French cancer genetic clinic.
- Administration of closed questionnaires before and after the second genetic consultation.
- Analysis of 108 subjects, focusing on pre- and post-consultation information-seeking behaviors.
Main Results:
- 35.2% sought information before the second consultation; 25.0% sought it afterwards.
- Pre-consultation ISB correlated with higher satisfaction regarding psychosocial consequences and certainty of gene carrier status.
- Women seeking information were more likely to be accompanied by family members.
Conclusions:
- A minority of women actively seek complementary information on BRCA genetic testing.
- ISB is linked to social network dynamics and consultation satisfaction.
- Cancer geneticists play a pivotal role in guiding women's decisions about genetic testing.