Blood and Tissue Banks
From WikiAdvocacy
A powerful way to consolidate your members' power to have an active role in research that truly benefits affected individuals is to create a repository for blood and tissue. A blood and tissue bank is an archive where specimens (DNA, blood, and tissues) can be stored for use in research to identify genes and their mutations. This research is designed to lead to new approaches to treatment for specific conditions in the future; it is not intended to yield treatment plans for individual donors. When an advocacy organization leads this effort, it can protect its members from potential conflicts of interest among researchers and corporations interested in genetic information.
Historically, the research environment has been competitive and fragmented, and blood and tissue collections have been small and inconsistently managed. A collection might contain samples only from individuals with more severe effects of the condition, since those individuals might be more motivated to participate in studies. Different collections might have different consent and confidentiality procedures, offering participants inconsistent protections. Samples have often been considered the property of the research entity that collected them, and this has hindered sharing material with other researchers and has limited reporting of outcome information to research participants.
These limitations can contribute to a sense among individuals and families with genetic conditions that they are "mined" for their biological material, perhaps without a clear benefit. This impression reduces trust between researchers and participants, especially for individuals affected by a rare condition that is not well understood.
A blood and tissue bank is not a trivial undertaking. Specimens must be collected and stored in a uniform way depending on the material and its expected use. Quality-control procedures such as methods of DNA extraction, archiving, and distribution must be established and carefully maintained. A facility may need to distribute kits and follow up with individuals and other facilities about specimen collection, as well as maintain secure physical plants with controls and backups to ensure safe, long-term storage of biological materials.
A good blood and tissue bank doesn't just have these physical attributes. It also has strong confidentiality protections, an informed decision-making process that is sensitive to research participants' needs, and a sound method for vetting researcher requests. A participant-centered bank supports the needs of individuals and families with genetic conditions protecting their interests, responding to their goals for improved outcomes, and reporting specific information to them as appropriate. All these protections and strengths require involved and knowledgeable direction that is both supportive of research and responsible to participants.
A cooperative effort can give a broad base of organizations access to blood and tissue banking, rather than leaving blood and tissue banks in the hands of wealthy organizations or organizations with unique relationships to existing institutions. A central leadership that establishes policies and practices can release the power of a tissue bank as a consolidator of substantial collections and a clearinghouse for participant-responsive work even to organizations that have no ready access to facilities or research partners.
This cooperative effort can establish recruitment policies, oversee ongoing education support for member organizations, engage members in a culturally sensitive informed-consent process, and implement data-management policies and procedures that protect privacy and access both to specimens and to the participants that contributed them. These policies and activities can give shape and focus to research with requirements such as IRB approval and agreements to provide regular progress reports for both scientific and lay audiences.
A cooperative blood and tissue bank can speed gene discovery, build mutation databases, and improve the understanding of genotype/phenotype correlations. These cooperatives gather organizations together to share the costs of the endeavor while enjoying the reduced overhead of larger-scale operations. And it can do this in a responsible way: by advocating for member organizations in interactions with researchers, enforcing protection of specimens used, and protecting the privacy of research participants. A collective biorepository can be a lever that allows members to move research.
Click here to learn more about the Genetic Alliance BioBank.
[edit] Internal Links
- Getting Needs onto the Research Agenda
- Educating Your Membership about Research
- Patient's Bill of Rights
- Genetic Privacy
- Promoting Research on a Condition
- Funding Research by Others
- Barriers to Rare Disease Research
- Consumers and Researchers: Making It Work
- Benefits of Collaboration with Advocacy Organization Community
- Facilitating Quality Research
- Research Models
