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Genetic Testing, Confidentiality, and Counseling

Alzheimer's and Genes: Concerns About Confidentiality

APOE testing, and indeed all genetic testing, raises ethical, legal, and social questions for which we have few answers. Generally, confidentiality laws protect APOE information gathered for research purposes. On the other hand, information obtained in APOE testing may not remain confidential if it becomes part of a person's medical records. Thereafter, employers, insurance companies, and other healthcare organizations could find out this information, and discrimination could result. For example, employment opportunities or insurance premiums could be affected.
 

Alzheimer's and Genes: Genetic Counseling

Depending on the study, research volunteers may occasionally have the opportunity to learn the results of their APOE testing. The meaning of these results is complex. Since the results of APOE testing can be hard to understand, and more importantly, devastating to those tested, it is recommended that research volunteers and their families receive genetic counseling before and after testing, if they have the option of learning the results.
 
People who learn through testing that they have an increased risk of getting Alzheimer's disease may experience emotional distress and depression about the future, because there is not yet an effective way to prevent or cure the disease. Through counseling, families can learn about:
 
  • The genetics of Alzheimer's disease
  • The tests themselves
  • Possible meanings of the results.

 

Due to privacy, emotional, and healthcare issues, the primary goal of genetic counseling is to help people explore and cope with the potential consequences of such knowledge.

 
Experts still do not know how limited information about Alzheimer's disease risk can benefit people. Among the issues are privacy and confidentiality policies related to genetic information and Alzheimer's disease, and the small number of genetic counselors now trained in neurodegenerative disorders. In addition, little is known about how the stigma of having an increased risk for Alzheimer's disease may affect people's families and their lives.
 
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