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Do I really want to know? Home DNA kit tests for risks of incurable diseases

Home DNA kit tests for risks of incurable diseases such as Alzheimer's and Parkinson's.

GREENSBORO, N.C. — Paige Walker of Greensboro has a routine during her early retirement. She walks her dog, practices her golf swing and cares for her grandchildren. Every morning, you'll find the 58-year-old in her kitchen working on word games. She wants to keep her mind sharp considering her family history.

"It's terrible, it's terrible, it's heartbreaking," said Walker.

Her grandmother, aunt Christine, and her uncle and her father who are twins were all diagnosed with Alzheimer's Disease.

"It just makes me want to cry and you know for yourself and also for those people because they don't deserve to be that way," said Walker.

She was curious to know if she was at risk for late-onset Alzheimer's disease so she took a home DNA test that checks for markers for certain incurable diseases including Alzheimer's and Parkinson's.

"When it said I got the email saying my results were ready, I had a little feeling in the pit of my stomach." 

To her relief, the results came back negative. It read: "You do not have the APOE for the variant we tested." 

A Facebook post on  WFMY News 2's Julie Luck's page led to this story and a deeper discussion. In the post Julie asked, "Would you want to know if you're at risk of developing such diseases [Alzheimer's or Parkinson's] or is ignorance bliss?

Some of you said yes including Julie Reaves Potts who wrote,"Lost my mom to Alzheimer's. I was there through all the horrible stages. So yes, I'd want to prepare somehow."

But others disagree.

Eddie Freeman posted,"I think not knowing would be best because knowing will worry you to death anyway."

The National Institutes of Health lists the benefits, risks and limitations of direct-to-consumer genetic testing. Some benefits include "It may help you be more proactive about your health" and "...genetic testing promotes awareness of genetic diseases." A risk includes "Unexpected information that you receive about your health, family relationships, or ancestry may be stressful or upsetting." 

Experts say the home DNA test can be empowering for some but a hindrance for others.

"If you take those results to a physician, it can be a very valuable and empowering experience to teach yourself something about yourself... These are probably not good tests for the anxious to be honest," said Dr. Ihtsham Haq, neurologist at Wake Forest Baptist Health.

Dr.Haq sees many benefits of home DNA tests.

"It's wonderful whenever folks have access to the latest technology. I think it's great when people have some autonomy figuring out what they've got," said Haq.

Researchers say Alzheimer's disease likely develops from multiple factors such as lifestyle, environment, age, sex and genetics. Dr. Haq explains genes are very complex. Numerous genes are associated with Alzheimer's but the home kit only tests for the most common one, APOE.

"If you've got what it's looking for the test will find it but there are a lot of things the test can't look for. (What are those?) All the other genes." 

Genes are simply a risk factor of Alzheimer's disease, not a direct cause. A positive result doesn't mean you'll develop late-onset Alzheimer's.  

"If you have an APOE mutation, you have a higher risk of Alzheimer's disease but you may never develop any symptoms of Alzheimer's at all not at wit," explained Haq.

The opposite holds true. A negative result doesn't mean you won't get the disease.

To clear any confusion, 23 and Me recommends customers speak with a medical professional before and after testing to help understand the results. 23 and Me also states it will not sell, lease or rent your information without your explicit consent.

Paige Walker admits she has doubts about her results. Regardless, she just wants to live life to its fullest.

"I want to focus on living until that happens and spend as much time with my family as I can and hope that I maybe I don't have it," said Walker.

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