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Counseling following direct to consumer genetic testing for Alzheimer's disease

Direct to consumer (DTC) personal genetic testing (PGT) is a popular choice for individuals in the United States who are interested in learning more about their genetic health risks without formally seeing a medical professional. The company 23andMe offers FDA-approved genetic risk tests for conditions including late-onset Alzheimer’s Disease (AD), Parkinson Disease, Celiac Disease, and the BRCA1/2 mutations. Although this company’s genetic risk testing results are accompanied by a generic information sheet regarding what each individual’s result means for each condition, formal genetic counseling is not included in the service. However, when a condition such as late-onset AD has both known genetic and behavioral risk factors, counseling becomes essential in preventing or delaying disease onset. Following a Mediterranean-style diet, regularly exercising, and regularly participating in cognitive activities (e.g. reading the newspaper or playing a musical instrument) are each thought to be protective against developing late-onset AD. Previous studies have shown that customers do not usually make significant lifestyle modifications after completing DTC PGT, though the majority of this literature may not be relevant to late-onset AD as it included customers of DTC PGT companies that no longer exist today and the genetic risk test for late-onset AD at that time was not yet approved by the Food and Drug Administration.
The proposed study is an interventional study that will compare DTC PGT customer exercise, diet, and cognitive activity habits before and after a personalized genetics counseling session. Exercise will be measured using the Godin-Leisure Time Exercise Questionnaire. Diet will be evaluated by a validated food frequency questionnaire evaluating daily servings of fruits, vegetables, and unprocessed nuts. Cognitive activity at the time of survey will be evaluated by a questionnaire asking for the frequency of various cognitive activities, such as reading newspapers, reading books, artistic activities, and social activities.

Identiferoai:union.ndltd.org:bu.edu/oai:open.bu.edu:2144/38736
Date09 November 2019
CreatorsThomas, Melissa
ContributorsConnors, Philip D., Weinstein, John R.
Source SetsBoston University
Languageen_US
Detected LanguageEnglish
TypeThesis/Dissertation

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