Why You Should Know Your Genetic Health Profile

I did an interview with AccessDNA, a site devoted to helping people understand the genetics of rare and common disease. Knowing one's susceptibility might help them to make more informed decisions.
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If you knew you had the genetic marker for a certain disease, would it make the difference to motivate you to change your lifestyle and get healthy? I'm asking the question because I recently did an interview with AccessDNA, a web site devoted to helping people understand the genetics and inheritance of both rare and common disease. The hope is that knowing one's susceptibility might help them to make more informed decisions about their disease management, treatment, screening and even prevention options.

Since I have lived with insulin dependent diabetes for 23 years this was the question they asked me:

AccessDNA: There is a lot of debate about testing young children for genetic susceptibilities to diseases such as heart disease and diabetes. Proponents of testing argue that knowing this information helps them modify their children's diet and avoid any known risk factors from a young age. Opponents argue that a healthy diet and lifestyle should be encouraged for all children regardless. If you could have known from a young age that you had genetic markers associated with susceptibility to type 1 diabetes, do you think it would have impacted how your parents raised you?

Zippora: It's hard to say how it would have impacted the way my parents raised me. They thought they were doing things right back then. The truth is that certain studies were not out. I've seen studies about milk and juvenile diabetes as well as vitamin D deficiency and diabetes. But neither of those studies were out then. So we would not have known to look for them. I did drink a lot of milk, and recently I was low in Vitamin D. I think so much has changed recently that today parents have much more information than we ever had. But we did eat well and we exercised a lot! Besides my daily ballet lessons, we used to run around at recess, and we played outside after school everyday. So I'm not really sure what my parents could have done differently with the information available at that time.

With that said, if it were today, they could check blood sugar levels, vitamin D levels, and even food allergies like to wheat and gluten. When I was diagnosed 23 years ago doctors were prescribing a high carbohydrate diet. Today it is mainstream to eat lower carbs, which is good for diabetes. I think if someone knows they are susceptible, it very well may make the difference for them to make healthy life changes, because we have the right information available now!

It is an interesting question and I do see both sides of the debate. I wish that every parent would feed their children healthy foods and encourage exercise that is fun regardless of any knowledge of genetic predisposition. And equally, I would hope each of us would take care of ourselves without the threat of some dismal outcome. But reality does not prove this to be true.

Just the other day, Francis Collins, the Director of the National Institutes of Health, was a guest on Charlie Rose, looking about 20 pounds thinner. Charlie commented on the dramatic change since last seeing his friend, even wondering if he was okay. It turns out Francis had discovered that he had the genetic markers for diabetes, and so he had begun to take the steps necessary to counter this predisposition. The knowledge that people who are overweight and inactive are at risk for diabetes was not enough in itself to get him to exercise and cut out sweets, Francis needed this extra incentive.

I'm not sure how many people would be as motivated as he was to finally change their potentially unhealthy behavior solely based on genetic marker information. But I do suspect if a parent were to find out their child might come down with a dreaded disease should the family not make changes, change would occur. While we may not always be willing to alter our own bad habits, most of us would do almost anything to save our loved ones from suffering.

We all know we should eat nourishing foods, exercise, and learn to handle stress, regardless of our genetic or hereditary susceptibility to any particular condition. But many of us find it difficult to consistently follow a healthy enough regimen. Perhaps access to information about our innate physiological tendencies might be just the right trigger to push us out of denial and into reality.

I know it can be frightening to discover you have higher than normal odds of coming down with a disease. But, believe me, it's far worse to deal with an illness once you have it, than it is to make the changes necessary to prevent a disease from manifesting in the first place!

See my full interview with AccessDNA here.

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