Original Paper

Knowledge of and Attitudes about Alzheimer Disease Genetics: Report of a Pilot Survey and Two Focus Groups
T.J. Moscarillo^a, H. Holt^a, M. Perman^a, S. Goldberg^a, L. Cortellini^a, J.M. Stoler^b, W. DeJong^d, B.J. Miles^c, M.S. Albert^e, R.C.P. Go^c, D. Blacker^a

Departments of
^aPsychiatry and
^bPediatrics, Massachusetts General Hospital, Harvard Medical School, Boston, Mass.,
^cDepartment of Epidemiology, University of Alabama School of Public Health, Birmingham, Ala.,
^dDepartment of Social and Behavioral Sciences, Boston University School of Public Health, Boston, Mass., and
^eDivision of Cognitive Neuroscience, Johns Hopkins University Medical Institutions, Baltimore, Md., USA

Address of Corresponding Author

Community Genet 2007;10:97-102 (DOI: 10.1159/000099087)

  Key Words

• Genetic education
• Genetic testing
• Genetic risk factors, Alzheimer

  Abstract

Objectives: In preparation for the development of an educational intervention on Alzheimer disease (AD) genetics, we undertook a pilot survey of knowledge in this area and attitudes toward genetic testing for AD among individuals with a family history of AD. Methods: For the pilot study, we administered a 30-min questionnaire to 57 unaffected individuals from a genetic linkage study. For the focus groups, we interviewed two groups of subjects, ages 44-70 years, with a family history of AD, one of 10 Caucasians and the other of 6 African-Americans. Results: The pilot study showed that there was limited knowledge of genetics overall and AD genetics in particular, considerable concern about personal risk, and little knowledge of or interest in genetic testing for the disease. The focus groups reinforced and fleshed out these impressions and highlighted the importance of caregiving experience in the attitudes toward personal risk for AD. Conclusions: These results underscore the value of genetics education for this and other complex diseases and suggest specific foci for educational interventions.

Copyright © 2007 S. Karger AG, Basel

  Author Contacts

Deborah Blacker, MD, ScD
Psychiatry/Gerontology 149-2691, Mass General Hospital East, 149 13th Street
Charlestown, MA 02129-2000 (USA)
Tel. +1 617 726 5571, Fax +1 617 726 5760
E-Mail blacker@nmr.mgh.harvard.edu

  Article Information

Number of Print Pages : 6
Number of Figures : 0, Number of Tables : 0, Number of References : 48