Genetic risk assessment for adult children of people with Alzheimer's disease: the Risk Evaluation and Education for Alzheimer's Disease (REVEAL) study.
As genetic risk factors continue to be identified for common, complex adult-onset diseases, it will become increasingly important to understand if, how, and when to translate these discoveries into clinical practice. This article provides an overview of and results to date from the REVEAL study, a multisite randomized clinical trial (n = 162) examining the impact of a genetic risk assessment program, including apolipoprotein E genotype disclosure, for adult children of people with Alzheimer's disease. The study's rationale and procedures are described, including the generation of numerical lifetime risk curves for use in the education and counseling protocol. Findings are summarized across numerous study questions, including (1) who seeks genetic risk assessment and why, (2) how apolipoprotein E results affect risk perceptions, (3) the psychological impact of genetic risk assessment, and (4) how risk information affects participants' subsequent health and insurance behaviors.
Roberts
J Scott
JS
Department of Neurology, Boston University School of Medicine, MA 02118, USA. jscottr@bu.edu
Cupples
L Adrienne
LA
Relkin
Norman R
NR
Whitehouse
Peter J
PJ
Green
Robert C
RC
D017668:Age of Onset; D000544:Alzheimer Disease / Q000209:etiology / Q000235:genetics* / Q000523:psychology; D001057:Apolipoproteins E / Q000235:genetics; D005260:Female; D005817:Genetic Counseling; D020022:Genetic Predisposition to Disease; D015438:Health Behavior; D006801:Humans; D007348:Insurance, Health; D008297:Male; D008875:Middle Aged; D010375:Pedigree; D018570:Risk Assessment; D013315:Stress, Psychological; D014342:Truth Disclosure
D001057:Apolipoproteins E