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Mayo Clin Proc. 2014 Oct;89(10):1389-96. doi: 10.1016/j.mayocp.2014.05.016. Epub 2014 Aug 26.

Public perceptions of presymptomatic testing for Alzheimer disease.

Author information

1
Department of Neurology, Mayo Clinic, Phoenix, AZ; Center for Individualized Medicine, Mayo Clinic, Phoenix, AZ. Electronic address: Caselli.richard@mayo.edu.
2
Banner Alzheimer Institute, Phoenix, AZ.
3
Sandra Day O'Connor College of Law, Arizona State University, Tempe.
4
Center for Individualized Medicine, Mayo Clinic, Phoenix, AZ.
5
Clinical Studies Unit, Mayo Clinic, Phoenix, AZ.
6
Biomedical Statistics, Mayo Clinic, Phoenix, AZ.
7
Center for Biology and Society and School of Life Sciences, Arizona State University, Tempe.

Abstract

OBJECTIVE:

To explore the self-expressed desire for, envisioned reaction to, and basic understanding of presymptomatic Alzheimer disease (AD)-related genetic and biomarker tests.

PATIENTS AND METHODS:

The Alzheimer's Prevention Registry is an online community of people at least 18 years of age who are interested in AD prevention research for purely informational purposes or to be considered for possible research participation in future studies. Information about presymptomatic testing and an online multiple choice format survey were posted from November 1, 2012, through June 20, 2013, on the registry website.

RESULTS:

Of 4036 respondents, 80.8% (3195/3952) wanted genetic testing if paid by insurance and 58.7% (2261/3851) if it would cost them at least $100. A total of 80.2% (3112/3879) wanted biomarker testing. If at high risk for AD, 90.5% (3478/3841) endorsed that they would "pursue a healthier lifestyle," but 11.6% (427/3706) endorsed "seriously consider suicide." The implication of a positive genetic test result was incorrectly understood by 13.1% (500/3812) and 32.6% (1255/3848) failed to view a positive biomarker test result as evidence of increased risk for or the presence of AD.

CONCLUSION:

Despite efforts to increase public awareness of AD, our survey results suggest that greater education of the public is needed. Interested patients should probably undergo psychological screening to identify those at high risk of adverse psychological outcomes, and disclosure of presymptomatic test results should be anchored to tangible constructive action plans, such as healthy lifestyle changes, long-term care planning, and, when available and appropriate, participation in research trials.

PMID:
25171823
PMCID:
PMC4369785
DOI:
10.1016/j.mayocp.2014.05.016
[Indexed for MEDLINE]
Free PMC Article

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