This Article Full Text (PDF) References Alert me when this article is cited Alert me if a correction is posted Citation Map Services Email this article to a friend Similar articles in this journal Similar articles in PubMed Alert me to new issues of the journal Add to Saved Citations Download to citation manager Request Permissions Request Reprints Add to My Marked Citations Citing Articles Citing Articles via Google Scholar Citing Articles via Scopus Google Scholar Articles by Hurley, A. C. Articles by Green, R. C. Search for Related Content PubMed PubMed Citation Articles by Hurley, A. C. Articles by Green, R. C. Pubmed/NCBI databases Medline Plus Health Information Alzheimer's Disease Genetic Testing Social Bookmarking                         What's this?

Genetic susceptibility for Alzheimer's disease: Why did adult offspring seek testing?

Brigham and Women's Hospital, Center for Excellence in Nursing Practice, and School of Nursing, Bouvé College of Health Sciences, Northeastern University, Boston, Massachusetts

Rose Harvey, RN, DNSc

School of Nursing, Bouvé College of Health Sciences, Northeastern University, Boston, Boston University School of Medicine, Boston, and E.N.R. Memorial Veterans Hospital, Bedford, Massachusetts

J. Scott Roberts, PhD

Boston University School of Medicine, Boston, Massachusetts

Chantel Wilson-Chase, MA

Brigham and Women's Hospital, Center for Excellence in Nursing Practice, Boston, Massachusetts

Stephanie Lloyd, MA

Janalyn Prest, MA

Margaret Lock, PhD

McGill University, Montreal, Quebec, Canada

Kathy J. Horvath, RN, PhD

School of Nursing, Bouvé College of Health Sciences, Northeastern University, Boston, Massachusetts, and E.N.R. Memorial Veterans Hospital, Bedford, Massachusetts

Robert C. Green, MD, MPH

Boston University School of Medicine, Boston, Massachusetts

This study explored why adult offspring of individuals with Alzheimer's disease (AD) sought genetic susceptibility testing for AD. Participants (N = 60) were a subset of subjects from the first randomized controlled clinical trial to offer such testing. Qualitative analysis revealed two central constructs: altruism and learning. Planning for the future, hoping to prevent AD, and need to know were concepts that explained the value of learning. These results add important contextual information into why people might seek information on their genetic risk for a severe neurodegenerative disease for which there are, as yet, no preventative treatments. As genetic susceptibility testing for numerous other diseases enters clinical medicine, these findings can enhance the knowledge and sensitivity of researchers and clinicians when they are asked by participants or patients whether they should be tested.

Key Words: Alzheimer's disease • genetics • susceptibilitytesting • qualitative research

American Journal of Alzheimer's Disease and Other Dementias®, Vol. 20, No. 6, 374-381 (2005)
DOI: 10.1177/153331750502000608


CiteULike    Complore    Connotea    Del.icio.us    Digg    Reddit    Technorati    Twitter    What's this?