What is it about?

Genetic information for Alzheimer's risk and other conditions obtained from direct-to-consumer sources or in research studies is being withheld from doctors for fear of misuse. If genetic information is to be a key part of health care, the medical record must provide better protections to protect patient privacy.

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Why is it important?

Well-founded concerns about the privacy of one's genetic information are preventing people from providing their doctors with the results of genetic tests that have revealed their risk of disease. If genomic medicine is to be fully useful, legal and other steps must be taken to protect genetic information that appears in the medical record.


We are in the age of genomic medicine. Yet, people are withholding their genetic information from health-care providiers for fear of misuse by insurance companies, employers, and government agencies. I was privileged to have the opportunity to hear the voices of people having genetic testing outside of the medical community and to convey their call for the better protection of genetic information.

Doris Zallen
Virginia Tech University

Read the Original

This page is a summary of: Alzheimer’s Disease: Risk Tests and the Medical Record, Journal of Alzheimer s Disease, November 2022, IOS Press,
DOI: 10.3233/jad-220584.
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