Maegan Kasteler | Nov 16, 2018

My Experience with Genetic Genealogy and Health Ancestry

My father was adopted. I never wondered much about what that meant for my DNA until he was diagnosed with a genetic form of colon cancer when I was 16 years old. Here's the thing. At that time, men weren't encouraged to get colonoscopies until they were 50 years old, and he was only 43. We didn't know he was at a higher risk of developing colon cancer because of his adoption.

My dad was a healthy man. He was a Scoutmaster for the Boy Scouts of America and consequently had to get a yearly physical. Never in the 10 years of being a Scoutmaster were there any indications of what was growing in his body. So it was a shock to everyone when we got the diagnosis, and even more shocking how far it had already progressed when we finally found it, and shocking yet again when he succumbed to the disease just 13 months later.

Because my dad was adopted in the sixties, there was very little regulation of family health information shared with adoptive parents. My grandparents were prepared for this. They had already adopted a daughter and would later adopt another girl and two boys.

As much as my grandparents were ready to accept the responsibility of raising these children without any knowledge of what they were predisposed to, they weren't ready for the fact that their 2 oldest children would develop and succumb to cancer.

After extensive tests, it was determined that my dad's cancer was caused by a genetic mutation—a mutation we had no way of knowing he had.

It should be noted that despite the unfortunate circumstances of my father’s diagnoses, we were actually situated in the perfect spot for his treatment. Living in the Salt Lake Valley, we lived less than an hour away from the world-class treatment at the Huntsman Cancer Institute.

On top of that, the Huntsman Cancer Institute is leading the world in research in genetic cancers, due partially to the cooperation between the cancer research center and The Church of Jesus Christ of Latter-day Saints and their family history database at FamilySearch. (You can read more about this research here). Because of this, I had been interested in the link between family history and genetics for years.

Flash forward a few years. I was turning 23 (a somewhat ironic number as you will see soon) and DNA ancestry kits are all the rage. My curiosity for what other health issues I am at higher risk for was evident to my mother, and I was surprised when I opened up her gift, a 23andMe health and ancestry test kit (now you see why my age was ironic).

So, I spat in my tube, mailed it in, and waited. I was apprehensive as I anxiously waited for my results.

When I first registered my kit, they asked all sorts of questions, including the choice to opt out of some or all of the diseases they test for variants of—and the list is long.

I opted in to know everything. I was tired of facing the unknowns of my own DNA.

Another worry I had was what DNA relatives might appear. My dad was always very grateful towards his birth mother for the opportunity she gave him by placing him for adoption. And he didn't have the desire to search for her. Being his daughter, I have always wanted to respect his wishes. Because of that, I am nervous when new DNA relatives are matched to me.

Then my test came back.

And I'm not going to lie. There wasn't anything groundbreaking in my DNA ancestry. I knew that two of my great grandparents on my mother’s side emigrated from Germany shortly after the end of WWI. I also already knew that some of my other relatives came from England, Prussia, and France.

My results confirmed what had been told to my family for generations, but the results also added that my father's side came from the same areas.

Next came the health information. Included was information about my carrier status for certain diseases, genetic health risk, wellness, and genetic traits. There was some cool information in there, but it was also a little strange. For instance, it blows my mind that they can tell based off of my saliva that I am "less likely than average to be afraid of heights" or that I am "likely to wake up around 9 a.m." or that I have "average odds of hating chewing sounds."

In the genetic health risk category, DNA is tested for things like thrombophilia, celiac disease, Parkinson's disease, and more. This is what I was really interested in. They don't have a test for colon cancer risk yet through 23andMe, but my dad's cancer had opened my eyes to all the other possible risks I had by not knowing my DNA.

My DNA ancestry and health results have done a lot to put my mind at ease and helped me to better understand what may come in my future. It should be noted that not every variant in DNA that is linked to these diseases is tested. In fact, in the BRCA1/BRCA2 test, only 3 of over 1,000 variants are tested for.

So, while these test results aren't the be-all and end-all, it is a starting point in better knowing my DNA, and consequently, better knowing myself.

Read about another’s experience with genetic genealogy here.

Maegan Kasteler

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