publication date: Oct. 27, 2017

Redefining “normal”: IU’s Komen Tissue Bank shows how race and abnormalities correlate with development of disease

By Matthew Bin Han Ong

When two women—a patient advocate and a scientist—embarked on a mission to collect “normal” breast tissue for comparative purposes, colleagues in oncology dismissed their idea as wild.

In the early 2000s, Connie Rufenbarger, a breast cancer patient advocate, and Anna Maria Storniolo, a professor of clinical medicine at the Indiana University School of Medicine and a member of the Vera Bradley Foundation for Breast Cancer Research Laboratories, were attending a meeting in Indianapolis when they realized that oncologists had no source of “true normal” breast tissue to use as control in studies.

“We were at a translational meeting where clinicians and basic scientists from the major universities in Indiana—Notre Dame, Purdue, IU Bloomington, IU Indianapolis—meet and exchange ideas,” Storniolo said to The Cancer Letter. “The keynote speaker was from NCI that year.”

It was during that gathering that Rufenbarger experienced a light bulb moment: How can we know the abnormal if we don’t know what’s normal? Why isn’t there a repository of normal breast tissue?

Storniolo, now executive director of the Susan G. Komen Tissue Bank at the Indiana University Melvin and Bren Simon Cancer Center, was skeptical. It would be impossible to set up a resource built on the extraction of tissue from healthy women, she thought.

“You don’t get it,” Storniolo said to Rufenbarger. “There’s no way that anyone is going to let us set up to collect breast tissue, and put it up in a bank for unspecified future use. Think about the legal issues, and the regulatory issues, and the ethical issues.”

“That’s ridiculous,” Rufenbarger said.

The dialogue continued, and over time Storniolo started to come around. The … Continue reading Redefining “normal”: IU’s Komen Tissue Bank shows how race and abnormalities correlate with development of disease

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