Early Engagement by Healthcare Professionals Helps Overcome Public Skepticism About Biobanking

Rather than a hard-sell of tumor-tissue repositories, a group in Florida is involving the community from idea conception to implementation.

Enlivening the public discussion about cancer biobanking will speed up the collection of specimens for research supporting the goal of personalized medicine. Biobanking is particularly important in minority populations, who experience a disproportionally greater burden of cancer incidence and mortality. But rather than unilaterally creating and launching a public education program, community medicine specialists in Florida first solicited public input.

"Before we even embarked on this project, we engaged the community in a dialogue," said Shalewa Noel-Thomas, PhD, MPH, program manager of the Tampa Bay Community Cancer Network at the H. Lee Moffitt Cancer Center and Research Institute, Tampa, Fla.

While cancer specialists may have an inherent understanding of the impact of biospecimen collection on furthering cancer research, the public’s perception of biobanking is less certain. "From the individual perspective, you are looking at doing [a greater] good by contributing to cancer research," Dr. Noel-Thomas said.

Funded by the American Recovery and Reinvestment Act, Dr. Noel-Thomas and colleagues have started with 12 focus groups to gain a better understanding of how biobanking is perceived among ethnic minorities in their area. For this program, biobanking is defined as the collection of specimens from the body, including tissue, hair, fingernails, blood, or urine, that are stored in a repository for future research. Based on the focus group results, the researchers will be able to assess community members’ knowledge of biobanking, their perceptions of specimen collection, and their attitudes toward tumor-tissue sampling (2010 AACR Science of Cancer Health Disparities abstract A18).

The first phase also consisted of biobanking tours for community members and the formation of a community advisory group to provide ongoing feedback about study methods and recruitment strategies.

The research will use data from phase I to move on to the next stage of the project. "In the second phase of the study, we will design educational materials and priming tools-booklets and DVDs-to further educate the community about what a biospecimen is and what biospecimen collection involves," Dr. Noel-Thomas said.

"Use of community engagement methods to improve communications of biospecimen collection/biobanking is one way to bring constituents’ voices into discussions and influence the way biobanks are implemented," the group wrote. "It is expected that public engagement from idea conception to implementation will prove central to mobilizing community participation."

FACT: Biobanking logistics

Researchers from the genetics and pathology department at University Hospital in Uppsala, Sweden, discuss their workflow for the collection of frozen solid tissue samples derived from fresh human patient specimens after surgery. Their system for integrating samples with cryosection and histopathology has been in place since 2001 (Methods Mol Biol 675:299-306, 2011).

VANTAGE POINT

A partnership between patients and medical science

Working with tumor tissues gives researchers the opportunity to find out why certain treatments work in some patients and not others, said Dr. Kerr, the Rhodes Professor of Clinical Pharmacology and Cancer Therapeutics at the University of Oxford, UK, and president of ESMO. “Biobanking is a gift and a partnership between patients and medical science.”

But biobanking does require that researchers own up to their responsibilities to the patients they are working with, said Dr. Ciardiello, professor of medical oncology and head of the laboratory of medical therapeutics at the Seconda Universita di Napoli in Naples, Italy. Patients need to be assured that their tissue gifts will be dedicated to the advancement of medical science and that anonymity can be secured if that is what a patient wants.