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Attitudes and risk perception concerning breast cancer and genetic testing - [German]


Duration:

Sep 2000 - Jan 2002

Funding body:

Bundesministerium für Bildung und Forschung (BMBF)

Contact:

Barth, Jürgen (PhD Dr.)

Albert-Ludwigs-Universität Freiburg

Institut für Psychologie

Abteilung für Rehabilitationspsychologie

Engelbergerstr. 41

79106 Freiburg

Germany

Phone: +49-(0)761-203-3053 Fax: +49-(0)761-203-3040

E-Mail: jbarth@psychologie.uni-freiburg.de
URL: http://www.psychologie.uni-freiburg.de/einric...isk.htm

Head:

Bengel, Jürgen (Prof. Dr. Dr.)

Barth, Jürgen (PhD Dr.)

Member:

Helmes, Almut (Dr.)

Reitz, Frauke

Short Description:

The present study was funded as of January 2001 by the German Ministry of Education and Research in the context of the program "Ethical, legal, and social aspects of human genetic research". The general aim of this study is to investigate women's attitudes toward genetic testing for breast cancer risk. Women who are found to carry an altered gene have an increased risk of developing breast or ovarian cancer later in life. We assess variables such as expected (positive and negative) consequences, intentions to obtain the test and knowledge of benefits, risks and limitations of testing. The study sample consists of women who have a first degree relative (FDR) with breast cancer ("FDR-group"; n = 200), breast cancer cases (these women may have affected relatives, too) ("cases-group"; n = 200) and women who neither have breast cancer themselves nor any relatives with breast cancer ("no breast cancer group"; n = 500). The study consists of a quantitative part in which we employ self-administered questionnaires and a qualitative part in which we conduct personal interviews with a subset of women.

Specific aims of the quantitative study: 1. Description of variables like knowledge, attitudes, expected consequences, risk perception, etc. separately for the three study groups and testing for statistically significant differences between the groups. 2. Relation of risk perception and/or (breast cancer) worry to knowledge, expected consequences etc. What are predictors for the motivation to pursue testing? A random sample of women of the general population receives a letter that includes information about the study. Women who do not wish to participate in the study have the opportunity to remove their name from the contact list. Study staff contacts the remaining women to conduct a brief telephone interview containing socioeconomic and cancer history variables. The cancer history variables are used to divide the sample into the three subgroups. Women then receive a self-administered questionnaire that assesses intentions to pursue testing, attitudes, fear, depression and risk perception (for a new diagnosis of breast cancer or a recurrence of breast cancer). Statistical analyses include descriptive measures for the groups and tests for significant differences between the groups. Predictors for the intention to pursue testing and attitudes toward testing are determined with regression analyses.

Specific aims of the qualitative study: 1. Do women who receive information about the possibility to test for genetic predisposition for breast cancer search for more information on this topic? 2. Does the search for information have an effect on risk perception, attitudes and intentions? 3. What factors influence attitudes toward testing? 4. What are reasons for and against the uptake of genetic testing? We select 20 women total of the three subgroups for the qualitative part of the study. Using the quantitative findings we develop an interview protocol. Content analysis of the interviews can describe the process how women perceive first information on the topic of genetic testing for breast cancer risk. Further analyses include the description of the motives for testing and the experienced advantages and disadvantages of testing.

Keywords

disease – genetic testing / counseling – human genetics – medical ethics – technology ethics

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