July 30, 2019

Community voices guide use of biobank samples in research

By Sharon Rosen

Article by Caitlin Doran

Community Advisory Board members interact with a Mayo researcher while attending a Mayo Clinic Biobank open house.

Mayo Clinic supports biobanks — large collections of patient biological samples—near each of its three campuses in Arizona, Florida and Minnesota, with the goal of advancing research to broaden the understanding of health and disease. Paired with each biobank, Mayo fields a community advisory board (CAB), whose members are recruited from the local community to help guide the direction and conduct of research.

“Each sample in the biobank represents a person from our local community,” says Barry Hall, a member of the Florida CAB. The board’s job is to safeguard those samples: to make sure they’re used in research that honors the donor’s contribution, even though the person who donated their samples may never be able to see or benefit from the results.

Community advisory board members also want to ensure that research using biobank resources aligns with the needs of the community. In Phoenix, Mayo Clinic collaborates with Mountain Park Health System and Arizona State University to host a CAB that works with the Sangre Por Salud (Spanish for Blood for Health) Biobank. This biobank was created to expand precision medicine research to the Latino community, a population that is underrepresented in biobanks and in research.

"Every community is different, and what they need from research is different too,” says Crystal Gonzalez, community advisory board coordinator for Sangre Por Salud.

Sangre Por Salud Community Advisory Board, 2014

In addition, community advisory board members ground research in the values of the community, helping investigators understand how their work may be perceived from the outside.

“I think researchers are so passionate about curing disease that they sometimes have blinders on,” says Kathryn Hollenhorst, a member of Mayo’s community advisory board in Minnesota. “I feel it is our responsibility to make sure they take the blinders off and be challenged to see things from a lay person’s perspective.”

A mutually-beneficial arrangement

The community advisory boards in Arizona, Florida and Minnesota play a critical role in Mayo’s individualized medicine research, says Richard Sharp, Ph.D., director of the Mayo Clinic Center for Individualized Medicine Bioethics Program. “Their perspectives are invaluable in developing individualized medicine approaches that will one day benefit the community.”

Suzette Bielinski, Ph.D., a Mayo Clinic epidemiology researcher, agrees. She recently worked with the Mayo community advisory board in Minnesota to review her study’s recruitment brochure and consent document. She says the CAB’s feedback was “invaluable, because it made the study materials easier to understand and more accessible to the general public.”

Not all researchers who use Mayo’s biobanks choose to engage with the community advisory board. Dr. Bielinksi considers that a missed opportunity. 

“Bottom line,” she says, “collaboration with the community advisory board enhances my research.”

Community advisory board members also benefit from the opportunity to take part in research. The more they participate, the more knowledgeable they become about the fields of genomics and individualized medicine.

“Members are ideal partners and advocates for Mayo investigators,” says Karen Meagher, Ph.D., associate director of public engagement, Mayo Clinic Biomedical Ethics Research Program. “They help communicate the value of the research back to the community.”

Mayo Clinic Biobank Community Advisory Boards

Rochester, Minnesota

The Minnesota community advisory board works with a wide range of researchers and its members draw on their history of engagement, which dates back to helping the biobank get started in 2007. Most of the current collection has been donated by Mayo Clinic patients.  

In addition to its research advisory role, the community advisory board is also actively engaged in community outreach. In 2016, they joined the Rochester Public Library to develop the Bioethics at the Cinema events, a movie screening and discussion series free and open to the public, designed to engage the community in conversations about important bioethics issues in research and clinical care.

Northeast Florida

Northeast Florida Community Advisory Board, 2015

The Florida community advisory board meets at Mayo’s campus in Jacksonville, but the group draws its members from throughout northeastern Florida. Jacksonville has a large and diverse population, with a significant number of retirees, which is reflected in the membership of the board and in the donors to the biobank.

Jacksonville also has a large geographic footprint and is home to many other medical institutions. The community advisory board is working to have membership reflect how patients in the area often move in and out of these different health systems.

Phoenix, Arizona

The Arizona community advisory board works with Sangre por Salud (blood for health), a biobank collaboratively managed by Mountain Park Health Center, Arizona State University, and Mayo Clinic. The biobank was created to expand precision medicine research the local Latino community. 

Research conducted with biological samples from Sangre por Salud focuses on health issues specific to this population; in particular, chronic health conditions, such as obesity and type 2 diabetes that disproportionately impact the Latino community. Community members who donate materials to the biobank are patients at Mountain Park Health Center, a Federally-Qualified Health Center that provides comprehensive health care to underserved populations.

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Tags: #Arizona State University, #Bioethics at the Cinema, #Center for Individualized Medicine Bioethics Program, #Mayo Clinic Biobank, #Mountain Park Health Center, #Rochester Public Library, #Sangre Por Salud Biobank, Barry Hall, biobank, Bioethics, center for individualized medicine, Community Advisory Boards, community outreach, Crystal Gonzalez, Dr. Karen Meagher, Dr. Richard Sharp, Dr. Suzette Bielinski, education, Kathryn Hollenhorst, mayo clinic, Mayo Clinic Biobank Community Advisory Boards, medical research, Mountain Park Health System, Precision Medicine, Research

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