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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


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