Acceptance of and Attitude Toward
Genetic Testing for Hereditary
Nonpolyposis Colorectal Cancer:
A Comparison of Participants and
Nonparticipants in Genetic Counseling |
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| Authors: | Monika Keller MD Ralf Jost Dipl Psych Martina Kadmon MD Hans-Peter Wüllenweber MD Carrie Mastromarino Haunstetter ScM Frank Willeke MD Christine Jung MD Johannes Gebert PhD Christian Sutter PhD Christian Herfarth MD Markus W Büchler MD |
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| Institution: | (1) Department of Surgery, University of Heidelberg, Heidelberg, Germany;(2) Psychosocial Care Unit, University of Heidelberg, Heidelberg, Germany;(3) Institute of Human Genetics, University of Heidelberg, Heidelberg, Germany;(4) Institute of Pathology, Division of Molecular Pathology, University of Heidelberg, Heidelberg, Germany |
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| Abstract: | PURPOSE: Data on the actual uptake of genetic testing for
hereditary nonpolyposis colorectal cancer (HNPCC) in a
clinical sample is still inconclusive. The present study aimed
to define the actual uptake of genetic counseling and testing
offered to an unselected sample of 140 patients with colorectal
cancer, fulfilling clinical criteria (Amsterdam or
Bethesda) suggestive of HNPCC, and to identify demographic
and psychosocial factors associated with the decision
to participate in counseling. METHODS: Crosssectional
survey. Eligible subjects had been consecutively
enrolled in a regional tumor registry between 1994 and
1998, and were invited to attend an information session for
HNPCC at the time genetic testing for HNPCC became available.
Participants and nonparticipants in the information
session completed a short questionnaire. RESULTS: The actual
uptake rate of the information session in this sample
was 26 percent. Participants and nonparticipants were comparable
with regard to clinical criteria suggestive of HNPCC,
awareness of the potential hereditary predisposition, and
previous history of cancer in the family. Some 60 percent of
participants experienced pronounced distress related to
their potential inheritance of the disorder, compared to 35
percent among nonparticipants. Distress reached a clinically
significant level in 28 percent of participants. Restricted
communication within the family was observed frequently.
Irrespective of groups, a positive attitude toward
obtaining a gene test result predominated. CONCLUSIONS:
Results suggest that expressed intention and attitude toward
genetic testing do not reliably predict actual uptake of
counseling or testing. Thorough interdisciplinary counseling
should be provided to every patient with clinical criteria
suggestive of HNPCC. The considerable distress related to
the hereditary disorder should be adequately addressed, as
should be communication issues. |
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| Keywords: | Hereditary
colorectal cancer Genetic counseling Uptake of genetic
testing Psychosocial distress Cancer worries Family communication |
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