Original Paper

Anxiety Related to Genetic Testing for Alpha-1 Antitrypsin Deficiency and Cystic Fibrosis in COPD and/or Bronchiectasis Patients
Marilyn E. Coors^a, Arnold H. Levinson^a, Gwen A. Huitt<sup>b

a</sup>University of Colorado at Denver and Health Sciences Center, and
^bNational Jewish Medical and Research Center, Denver, Colo., USA

Address of Corresponding Author

Community Genet 2008;11:135-140 (DOI: 10.1159/000113875)

  Key Words

• Informed consent
• Anxiety
• Genetic testing
• Ethics
• -1 antitrypsin deficiency

  Abstract

Objective: To describe the psychological reaction to information about diagnostic genetic testing for -1 antitrypsin deficiency (Alpha-1) and cystic fibrosis (CF) in chronic obstructive pulmonary disease and/or bronchiectasis patients who were tested but did not know the results. Methods: One hundred and three adults took the State-Trait Anxiety Inventory before and after a standardized educational intervention and responded to a questionnaire. Results:Information about the limitations, risks and benefits of Alpha-1 and CF testing did not raise mean anxiety levels. Mean anxiety was slightly lower after the educational intervention than at baseline (mean pretest score 35.0, posttest score 33.7; p < 0.05). Participants whose physician preinformed them of genetic testing had slightly higher mean anxiety than other participants, both before and after the intervention, but scores were comparable to those in a normative sample of general medical and surgical patients. Conclusions: Disclosure of information regarding Alpha-1 and CF testing appears to be potentially acceptable to patients and unlikely to prevent clinicians from conducting useful diagnostic procedures. This study is a step in alleviating concerns about raising issues related to genetic testing for Alpha-1 and CF in chronic obstructive pulmonary disease patients during the informed consent process.

Copyright © 2008 S. Karger AG, Basel

  Author Contacts

Marilyn E. Coors, PhD
Center for Bioethics and Humanities B137
University of Colorado and Denver Health Sciences Center
4200 East Ninth Avenue, Denver, Colorado 80262 (USA)
Tel. +1 303 315 0203, Fax +1 303 315 0820, E-Mail marilyn.coors@uchsc.edu

  Article Information

Published online: March 26, 2008
Number of Print Pages : 6
Number of Figures : 0, Number of Tables : 2, Number of References : 38