Examining information-seeking behavior in genetic testing for cancer predisposition: A qualitative interview study

Bettina M Zimmermann; Julia Fanderl; Insa Koné; Manuela Rabaglio; Nicole Bürki; David Shaw; Bernice Elger

doi:10.1016/j.pec.2020.09.019

Examining information-seeking behavior in genetic testing for cancer predisposition: A qualitative interview study

Patient Educ Couns. 2021 Feb;104(2):257-264. doi: 10.1016/j.pec.2020.09.019. Epub 2020 Sep 17.

Authors

Bettina M Zimmermann¹, Julia Fanderl², Insa Koné², Manuela Rabaglio³, Nicole Bürki⁴, David Shaw⁵, Bernice Elger⁶

Affiliations

¹ Institute for Biomedical Ethics, University of Basel, Basel, Switzerland; Institute of History and Ethics in Medicine, Technical University of Munich, Munich, Germany. Electronic address: bettina.zimmermann@unibas.ch.
² Institute for Biomedical Ethics, University of Basel, Basel, Switzerland.
³ Department of Medical Oncology, Inselspital, Bern University Hospital, University of Bern, Bern, Switzerland.
⁴ Women's Clinic and Gynecological Oncology, University Hospital Basel, University of Basel, Basel, Switzerland.
⁵ Institute for Biomedical Ethics, University of Basel, Basel, Switzerland; Care and Public Health Research Institute, Maastricht University, Maastricht, the Netherlands.
⁶ Institute for Biomedical Ethics, University of Basel, Basel, Switzerland; Center for Legal Medicine, University of Geneva, Geneva, Switzerland.

PMID: 32988685
DOI: 10.1016/j.pec.2020.09.019

Abstract

Objective: This study aims to assess information needs and information sources and seeks to illustrate what at-risk individuals consider motivators of and barriers to information-seeking before and after genetic testing for cancer predisposition.

Methods: Semi-structured interviews with people seeking genetic counseling in Switzerland were analyzed qualitatively using thematic analysis. Wilson's model of information behavior was the theoretical framework.

Results: We identified four themes that illustrate motivators of and barriers to information-seeking: attitudes and emotions; knowledge; social environment; and demographic factors. We also elucidated information needs and collected participants' information sources.

Conclusion: This study£s empirical approach helps healthcare professionals to understand their patients' behaviors and wishes concerning information-seeking more concretely than theoretical models alone. The study also identifies information gaps, especially outside the genetic counseling setting.

Practice implications: Genetic counselors and other healthcare professionals need to purposefully assist patients in finding trustworthy and accessible information. Healthcare professionals in all disciplines need to be educated about predictive genetic testing.

Keywords: BRCA; Cancer predisposition; Genetic testing; Health communication; Information-seeking behavior.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Genetic Counseling
Genetic Predisposition to Disease
Genetic Testing
Health Knowledge, Attitudes, Practice
Humans
Information Seeking Behavior*
Neoplasms* / diagnosis
Neoplasms* / genetics
Qualitative Research
Switzerland