The world’s only normal breast tissue bank has marked its 10th year collecting and researching healthy women’s breast tissue.
Nearly 5,000 women have donated tissue to the Susan G. Komen Tissue Bank at Indiana University Simon Cancer Center since 2007, helping advance the search for a cure.
The bank was founded in response to a call from scientists for healthy tissue to aid in comparative research, explains Dr. Anna Maria Storniolo, the cofounder and executive director of the bank.
She says the the goal is to determine why one woman develops breast cancer and not another, and healthy tissue is critical for that research.
“The breasts are different from the very beginning so they have different breast cancer because they have different cells from the start,” says Storniolo. ”No one knew that before.”
In addition to biopsied tissue, the bank collects other data about donors, such as medical history, genetic profile and behavior. That information is shared with researchers around the world and more than 70 scientists have used samples from the bank.
At least 35 research papers have been published to date using the bank’s samples.
Important findings have included a deeper understanding of the genesis of cancer at the cellular level, ethnic variation in breast cells leading to different type of cancer, and the influence of obesity on development of breast cancer.
Komen Tissue Bank at IU Simon Cancer Center researcher Natascia Marino, Ph.D. explains how they are preparing the tissue for research.
Storniolo had the idea of the tissue bank a decade ago, but she wasn’t sure it was viable. At the time she was a doctor as well as a soccer mom. She staged an impromptu poll of other mothers at a game one day.
“I asked 20 to 25 random ladies that I didn’t know, ‘OK you don’t know me, this is what I’m thinking of doing,’” Stroniolo recalls. “With the exception of one person they all looked at me and said ‘yes’. That was really the spark.”
All the logistics fell into place and women started showing up for collection events. Storniolo says that women at these events have said donating their tissue to research is one of the most important things they’ve ever done.
“They can be physically a part of it,” says Storniolo. “At the end of the day Hoosiers are going to be able to say we helped.”
In the search for a cure nearly 5,000 women have donated tissue and more than 10,000 have donated DNA and blood. The tissue bank has held 35 collection events around the country.
The tissue bank has worked to reach out to women of color as well, to ensure racial diversity of the samples. In 2012, when Indianapolis hosted the Super Bowl, the Komen Tissue Bank hosted the Super Cure, an tissue collection event. 700 women showed up, nearly half of them were from minority groups including Deidre Lindsey, who volunteered in the informed consent area.
“I was receiving questions about, does it hurt, what can I expect afterwards?” Lindsey recalls. “I had the form and what to say but I thought it would be way more impactful if I could answer them as someone who had experience as a donor.”
Lindsey hopes the diversity of the donations grows.
“We need to get the word out and get more minority women out participating in more clinical trials so we can find a cure for disease that impacts us in the way that it does.”
Stroniolo says the racial differences in breast tissue have been one of the major findings.
“We know now that there are certain kinds of breast cancer that are more common in certain races,” says Storniolo.
African American women are less likely to develop breast cancer but more likely to die from it. Stroniolo says scientists used to believe this was related to disparities in health care but the research shows otherwise.
“They develop a different type of breast cancer that’s much more aggressive,” says Storniolo.
Now after a decade, there have been a handful of women who have donated before and after cancer. Lisa Miller is one of them. When she was approached to donate again after her diagnosis she didn’t hesitate.
“I said you take whatever you need because I have daughters and this research is going to impact them more than me.” Miller says.
The Komen Bank is planning a longitudinal study to follow up with past donors breast health. It is developing plans to expand collection events and include a more robust ethnic mix.