Genetic Counselor’s Goal: Knowledge Is Power

IU Health Precision Genomics genetic counselor Leigh Anne Stout is part of a team, helping patients navigate their diagnosis and treatment.

She’s like a sleuth of sorts. Leigh Anne Stout focuses on removing impossibilities and uncovering clues. Similar to any primetime detective drama, she works with a team – all investigators of sorts.

“A typical patient in our Precision Genomics clinic is usually someone already diagnosed with cancer. We are looking for any sort of genetic differences in the tumor that we can match with a treatment. A small percentage of those differences are ones patients are born with,” said Stout, who joined the Precision Genomics team about six months ago.

Precision Genomics is a program dedicated to the integration of cutting-edge genomics – the care of patients with metastatic cancer. Stout joins a team of specialists who sequence all 22,000 genes in a patient’s genome, including genes of a specific tumor, along with healthy tissue. That research serves at the driver for a specific treatment program for the patient.

For Stout, one of two genetic counselors on the team, that research goes beyond patient care; it extends to family.

“A lot of people are concerned about their kids. That’s the number one question: ‘Is my child going to have cancer and is there anything I can do to ideally prevent or at a minimum diagnose it at an early age?’” said Stout. One facet of genetic testing is determining if a parent has a genetic predisposition to develop cancer. If so, their children are often at a 50/50 chance of being diagnosed with that cancer.

About five to 10 percent of cancers are hereditary and include, ovarian, breast, and colon cancer, said Stout, who generally meets patients when their results are complete.

“When our whole team is going through various treatment options with a patient I will talk about their germ line finding and then we usually offer confirmatory testing. I will meet with them again after that testing is complete. I will then meet with them again after that testing is complete. At that point, they have often had some time to process the information and possibly share it with family members,” said Stout. Often she meets with one of two family members; some patients will include extended family members for gene testing.

“Think of it as knowledge is power. If there is a hereditary predisposition to cancer then we may suggest medical management such as early mammograms or colonoscopy screenings,” said Stout.

“I really like working with families and helping support them through what has the potential to be very difficult information to understand and share with family members. I like knowing we’re coming up with a personalized medical management approach to caring for family members,” said Stout. In addition to helping patients understand the information they receive, she may refer them to support groups and specialists.

More about Stout:

  • She is married to Daniel Stout. They have two dogs.
  • She enjoys playing tennis and trying out new restaurants.
  • She grew up in northwest Ohio where her father still lives. She has two brothers. Her mother was diagnosed with rectal cancer and passed six weeks after starting treatment.  “When you experience a loved one going through a traumatic experience like that it shows that everyone has a unique story and a unique family story,” said Stout.

— By T.J. Banes, Journalist, IU Health.
   Reach Banes via email