Physician shares genetic testing journey and gains a patient’s perspective along the way

Dr. Michael Dulin, Chief Medical Officer with data analytics business Tresata who also works as a family physician, shared his experience of genetic testing at the HIMSS Precision Medicine Summit in Boston this week.

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A physician who splits his time between family medicine and health tech found himself in the role of a patient when he decided to investigate whether he had inherited genes that increased the likelihood he would develop kidney cancer. Dr Michael Dulin, who also works as Chief Medical Officer with data analytics business Tresata, recounted his patient journey at the HIMSS Precision Medicine Summit in Boston this week.

Family pictures punctuated Dulin’s story. Following the death of his father from kidney cancer, he looked back at his family tree and realized that several aunts and uncles had succumbed to kidney cancer or some other type of cancer.

“I wanted to put a personal face on this because that’s the goal today,” Dulin.  “Think about being in my shoes. What would you do if this were your family history?”

He recalled that he had a fun career serving as an engineer, a physiologist, primary care physician, data care redesign, He investigated doing genetic testing but with two kids in college, the cost was prohibitive.

“I figured if anyone can handle genetic testing it was me. I should know what it means I should be able to handle the information.”

He noted that 23andMe’s test provided some interesting revelations — he is predisposed to having a hairy back — but he didn’t have any of the key disease states.

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He eventually found another company doing more thorough genetic analysis —one of which referred him to a genetic counselor when he requested it. Two years ago, when he sought the advice of a genetic counselor, the cost of doing a genetic test for the 29 genes known to cause kidney cancer was $14,500. Dulin, who already had two children in college, deemed the cost too high. But only a year later the cost had come down significantly for the same test. So he decided to “go for it” since the reduced price tag made getting the test a realistic option.

“It came back and, shit! It was positive. I really didn’t believe it was going to be positive. Suddenly I wasn’t a physician anymore or an executive anymore. I was mortal; I was someone who could die from kidney cancer and probably I would die from kidney cancer. I had never really thought how I would feel about it being positive. Right away I felt pretty guilty because I had this gene I had passed onto my two kids.”

Dulin noted that his concern then turned to his electronic medical record which resided with his employer. Could this influence his employment? Would it be considered a pre-existing condition under the Affordable Care Act? What would be the negative impact on Dulin and his family for doing this genetic testing?

“I left that day feeling pretty confused, sad, anxious and depressed. It’s a pretty scary thing to have happen,” he said.

In the days that followed he relied on PubMed and other resources at the University of North Carolina at Chapel Hill and read up on research for papillary renal cell cancer and what steps he could take to improve his health.  He learned that people with a high body mass index had a greater chance of developing kidney cancer as did smokers but that [moderate] alcohol consumption could be beneficial, for instance.

Dulin said that one benefit of the experience was finding out that both of his children had tested negative for inheriting the gene. It was a moment that clearly brought great relief to him but was an unexpectedly emotional moment as he talked about it.

He also sought to reconnect with old friends and tick off a few items on his bucket list. But the experience gave him a better understanding of the anxiety and decisions patients in this situation face without the benefit of a medical background.

Photo: Andrzej Wojcicki, Getty Images