Planning the Biobank
"We must begin now to prepare for the future; we cannot wait until the details are known or fully understood, nor can we expect that others will address our concerns or solve our problems. ... This engagement in the form of discussion, debate, reading and thoughtful consideration is in itself the education process essential to preparation."
— David B. Schowalter, M.D. (1960-2007)
Consultant, Mayo Clinic Department of Medical Genetics
Co-Founder, Mayo Clinic Biospecimen Trust Oversight Group
Planning for the Mayo Clinic Biobank began five years before the collection of initial samples in April 2009. Though many researchers and leaders at Mayo Clinic were committed to the creation of the Biobank, the interests and concerns of the entire community needed to be considered before the project could begin.
Our planning process included many stakeholders inside and outside of Mayo Clinic. Planning and putting together the biobank involved:
- Interviewing patients participating in genetic research
- Soliciting opinions of experienced Mayo Clinic physicians and researchers
- Establishing the Mayo Clinic Biospecimen Trust Oversight Group (BTOG)
- Consulting with outside advisers, such as researchers at the Marshfield Clinic Biobank
- Holding a formal Deliberative Community Engagement event
- Receiving approval and committed resources from Mayo Clinic leadership
- Receiving approval from the Institutional Review Board (IRB) for the Mayo Clinic Biobank plans
- Establishing a Community Advisory Board
Working with the community
All members of our community have a stake in the policies that govern science and medical research. Mayo Clinic recognized that the citizens of Olmsted County would be important partners in the proposed Biobank because they are potential donors to the Biobank. In order to involve the community, Mayo Clinic sought guidance from community members and used this advice to create policies and make decisions that reflect the community's hopes and concerns.
Deliberative community engagement
In September 2007, Mayo Clinic held a Deliberative Community Engagement event. Twenty citizen deliberants, chosen to represent the population of Olmsted County, took part in in-depth conversations about DNA biobanking. Citizens read background material, heard from scientists and patient advocates, and deliberated with one another over two weekends. On the final day of the event, deliberants created recommendations for the design of the Mayo Clinic Biobank.
The hopes and values expressed by the community guided Mayo Clinic's development of the Biobank, particularly procedures and practices to protect human subjects. One recommendation voiced by the deliberants was the need for ongoing community guidance and involvement in Biobank governance. Therefore, Mayo Clinic established a Community Advisory Board to ensure that the voice of the community continues to be heard.
BioNews issue No. 8 (Spring/Summer 2013) highlights: