title: Acceptance of and attitude toward genetic testing for hereditary nonpolyposis colorectal cancer: a comparison of participants and nonparticipants in genetic counseling.
abstract: OBJECTIVE
  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
  Cross-sectional 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.
authors.affiliation: Department of Surgery, University of Heidelberg, Heidelberg, Germany. monika_keller@med.uni-heidelberg.de
authors.forename: Monika
authors.initials: M
authors.lastname: Keller
authors.forename: Ralf
authors.initials: R
authors.lastname: Jost
authors.forename: Martina
authors.initials: M
authors.lastname: Kadmon
authors.forename: Hans-Peter
authors.initials: HP
authors.lastname: Wüllenweber
authors.forename: Carrie Mastromarino
authors.initials: CM
authors.lastname: Haunstetter
authors.forename: Frank
authors.initials: F
authors.lastname: Willeke
authors.forename: Christine
authors.initials: C
authors.lastname: Jung
authors.forename: Johannes
authors.initials: J
authors.lastname: Gebert
authors.forename: Christian
authors.initials: C
authors.lastname: Sutter
authors.forename: Christian
authors.initials: C
authors.lastname: Herfarth
authors.forename: Markus W
authors.initials: MW
authors.lastname: Büchler
mesh_terms: D000328:Adult; D000368:Aged; D001007:Anxiety; D001294:Attitude to Health; D003123:Colorectal Neoplasms, Hereditary Nonpolyposis / Q000175:diagnosis* / Q000235:genetics*; D003430:Cross-Sectional Studies; D005260:Female; D005817:Genetic Counseling; D005820:Genetic Testing / Q000523:psychology*; D006306:Health Surveys; D006801:Humans; D008297:Male; D008875:Middle Aged; D010349:Patient Compliance; D013315:Stress, Psychological