SJU's Institute for Clinical Bioethics Supports Pediatric Brain Cancer Research at CHOP

Tuesday, November 7, 2017

by Katie Smith '15

Before 15-year-old Michael Gustafson, who was nicknamed "Swifty," died of pediatric brain cancer in 2012, he chose to donate his postmortem brain tissue to research.

“I’m giving up my life to find a cure,” he said in a family video. In Michael’s honor, the Gustafson family has formed the Swifty Foundation, dedicated to funding and increasing awareness for pediatric brain cancer research.

Gustafson’s decision was — and remains —  a relatively uncommon one. Tissue donation is a crucial component of cancer research, allowing scientists to study tumor and metastasis tissue and better administer treatments. However, samples are scarce. Only one to five percent of postmortem brain tumor tissue gets donated.

“It is a difficult decision for families to make,” says Professor of Theology and Health Services Peter Clark, S.J., director of the Institute for Clinical Bioethics (ICB) at Saint Joseph’s University. “It’s made even worse by a lack of information and by the logistical challenges in tissue harvesting.”

According to Fr. Clark, a medical bioethicist, most families choose to let children die at home. Yet, the first 24 hours after death are crucial for successful tissue donation, requiring the expertise of multiple medical professionals in a very small window of time — and with no added cost to families.

Fr. Clark and the ICB’s five research fellows have partnered with the Swifty Foundation to study pediatric brain tissue donation and the best methods to increase it. The project supports the Childhood Brain Tumor Tissue Consortium at the Children’s Hospital of Philadelphia (CHOP), which houses the collected samples. The consortium enables vital pediatric cancer research at CHOP and makes the data available for research at hospitals across the country.

“Increased tissue donation will allow CHOP to offer more vital data to leading cancer researchers,” says Fr. Clark. “It is a small step in the huge project of beating childhood brain cancer.”

The project builds on a previous ICB study, published in 2016 in the Internet Journal of Pediatrics and Neonatology. Fr. Clark and his group recommended ways to overcome the barriers to tissue donation, including that doctors should compassionately, but directly, share information about the process, beginning when patients are diagnosed.

“CHOP has created a postmortem program that reflects most of the ICB’s recommendations,” says Al Gustafson, Michael’s father and co-founder of the Swifty Foundation. “They are capable of receiving samples from anywhere in the country, and once our model encouraging donation is fully established, we hope to bring the program to the other 16 children’s hospitals that participate in the Consortium.”

In the pilot year of CHOP’s program, the hospital received 12 donations, a 100 percent increase in what they typically receive annually.

Continuing to examine pediatric brain cancer from multiple angles, the ICB’s current project uses data analytics to help create a more accurate survival rate for children diagnosed with brain cancer. Current research supports an approximate survival rate for the first five years after diagnosis of 80 percent; however, that statistic is the same for adult brain cancer, as most studies look at adult patients.

“The 80 percent statistic is overly optimistic and unhelpful for families,” says Fr. Clark. “Publicizing a high rate of survival has lead to decreased funding for pediatric brain cancer research.”

Graduate student in business intelligence and analytics, Surya Teja Uppunuthula, of Hyderabad, India, examines data from CHOP and the National Cancer Institute to develop a new rate.

“Having a five-year survival benchmark for both pediatric and adult cancer patients — when the average age of a child’s diagnosis is eight-years-old and an adult’s is 65-years-old — seems inappropriate and unjust,” says Teja Uppunuthula.

The ICB believes that a more realistic statistic will increase funding to childhood cancer research, enabling experts to better utilize the data at CHOP’s consortium.

“Honesty is integral in patient care,” says Fr. Clark. “The ICB wants better information for families, as well as better funding for our country’s youngest cancer patients.

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