title: Attitudes Toward Genetic Testing for Celiac Disease.
abstract: HLA molecular typing for celiac disease (CD) is a genetic test with a high negative predictive value. The aim of this study is to explore knowledge of and attitudes towards genetic testing (GT). A 25-item questionnaire was developed by a multidisciplinary team and distributed to members of CD support groups across the United States. Respondents (n = 1835) were mainly female (88 %), married (76 %), and college-educated (55 %), with a median age range of 31-50 years. Those who were married (82 vs 75 %, p = 0.002), had children (82 vs 74 %, p < 0.001), and had pursued education beyond high school (81 vs 68 %, p = 0.004) were more likely to be aware of the availability of GT. On multivariable analysis, adjusting for age, sex, education, marital status, region of residence, and having children, college-education (OR 2.05, 95 % CI: 1.33-3.16) and having children (OR 1.56, 95 % CI: 1.15-2.11) remained significant predictors of GT awareness. A majority of patients with a personal or family history of CD planned GT for their children, and the most common concerns regarding GT were cost and impact on health care and/or insurance. In conclusion, awareness of GT is high among CD support group members. Efforts should be made to increase knowledge of GT in those with a lower educational level, and healthcare professionals should attempt to address concerns regarding GT cost and the impact of results on health care and insurance status.
authors.affiliation: Department of Medicine, Celiac Disease Center, Columbia University Medical Center, Harkness Pavillion 180 Fort Washington Ave Room 936, New York, NY, 10032, USA.
authors.forename: Abhik
authors.initials: A
authors.lastname: Roy
authors.affiliation: Department of Medicine, Celiac Disease Center, Columbia University Medical Center, Harkness Pavillion 180 Fort Washington Ave Room 936, New York, NY, 10032, USA.
authors.forename: Michele
authors.initials: M
authors.lastname: Pallai
authors.affiliation: Department of Medicine, Celiac Disease Center, Columbia University Medical Center, Harkness Pavillion 180 Fort Washington Ave Room 936, New York, NY, 10032, USA.
authors.forename: Benjamin
authors.initials: B
authors.lastname: Lebwohl
authors.affiliation: Colorado Coagulation, Laboratory Corporation of America® Holdings, Englewood, CO, USA.
authors.forename: Annette K
authors.initials: AK
authors.lastname: Taylor
authors.affiliation: Department of Medicine, Celiac Disease Center, Columbia University Medical Center, Harkness Pavillion 180 Fort Washington Ave Room 936, New York, NY, 10032, USA. pg11@cumc.columbia.edu.
authors.forename: Peter H
authors.initials: PH
authors.lastname: Green
mesh_terms: D000328:Adult; D001364:Awareness; D002446:Celiac Disease / Q000235:genetics* / Q000523:psychology*; D005260:Female; D020022:Genetic Predisposition to Disease / Q000235:genetics* / Q000523:psychology*; D005820:Genetic Testing; D007722:Health Knowledge, Attitudes, Practice; D006306:Health Surveys; D006650:Histocompatibility Testing / Q000523:psychology; D006801:Humans; D008297:Male; D008875:Middle Aged; D011795:Surveys and Questionnaires; D014481:United States
keywords: Attitudes; Awareness; Celiac disease; Education; Genetic testing; Genetics; HLA; Knowledge; Support groups; Survey