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NIH Sep 1, 1998 | R01
Perceptions of Risk and Genetic Testing for AD
Institution: Johns Hopkins University School of Medicine
FOA Number: PA-96-042
Abstract
The investigators plan to develop an information base on how the public, particularly those at increased risk, comprehend the current information regarding inheritance of Alzheimer's Disease (AD) risk, understand the role of competing risk factors, and view such testing. In addition physician understanding and interest in genetic testing for AD will be studied. Specific aims also include comparison of respondent and physician expectations of the testing process. The investigators rely on survey methodology using previously tested lines of questioning. Participants will include adult offspring (n=700) of previously studied AD patients and physicians (N=335) who treat these patients. The proposed study focuses on knowledge of AD genetic risk and attitudes toward presymptomatic genetic testing where false negatives and false positives are a prominent feature. The investigators are concerned with personal characteristics associated with interest in testing, with emphasis placed on tolerance for test uncertainty (TTU) as a strong predictor of test acceptance. Focus groups of high risk offspring and physicians will be conducted to explore the educational needs of these populations.
FUNDING AGENCY:
Funder:
NIHInstitute:
NATIONAL HUMAN GENOME RESEARCH INSTITUTEFunding Type:
R01Project Number:
R01HG001655Start Date:
Sep 1, 1998End Date:
Aug 31, 2000PROJECT TERMS:
Alzheimer's Disease, Apolipoprotein E, behavioral /social science research tag, Clinical Research, data collection methodology /evaluation, family genetics, Gene Expression, genetic disorder diagnosis, Genetic Markers, genetic susceptibility, Health behavior, health care policy, health care professional practice, Health education, Health Surveys, human population study, human subject, Perception, Public Opinion, Questionnaires, social perception