1. Development of Partnerships:
A Project To Ascertain Alaska Native People’s Views on Specimen Banking
Vanessa Hiratsuka, MPH, Jennifer Brown, BA, Theresa Hoeft, PhD, and Denise Dillard, PhD
Southcentral Foundation, Research Department, Anchorage, AK
PURPOSE
METHODS
RESULTS
SUMMARY
To explore the views of biobanking research among Alaska Native community members and leaders across the state of Alaska using a community-based participatory research (CBPR) approach.
Management of the AASB is provided by the Alaska Area Specimen Bank Working Group (AASBWG).
Partnering Organizations Comprising AASBWG
Southcentral Foundation
Arctic Investigations Program of the Center for Disease Control and Prevention
Alaska Native Tribal Health Consortium
Alaska Area of the Indian Health Service
Partnership Process
Partnering organizations posed the question of how Alaska Native people view the collection and use of biological samples.
Members of the partnering organizations met four times to develop and finalize the research plan.
Following pilot testing, 25 THOs were approached through presentations in each location and asked to partner and guide the study within their region.
Village based community consultants were hired to assist in focus group recruitment.
Fourteen THOs agreed to partner with the research team resulting in 178 individuals participating in 29 focus groups held in 14 locations across Alaska.
Atlas.ti software was used to compile the range of views across all participants then between leaders and community members.
Partnership Timeline
Focus groups revealed two broad categories of participant responses: research process and context.
Overall Findings
Participants expect researchers to be transparent throughout the research process and to return meaningful results to them.
Participants are very interested in how samples are stored and used.
Participants confused biological sample collection for research purposes with clinical tests or collection for blood donation or testing for legal purposes.
Historical experiences, future implications of research findings, and portrayal of Alaska Native people were mentioned in the discussion groups.
Participants considered the relative harms and benefits of research in producing meaningful advances in health for Alaska Native people.
Results Dissemination
Findings were summarized into newsletter form and presented to partners for comment.
Community partnering organizations were contacted to determine their preferred method for results return. Newsletters were sent to all partnering organizations with presentation of findings also occurring in eight locations.
Focus group results and policy recommendations on AASB policies and procedures were shared with the members of the AASBWG.
Policy Recommendations
Consider development of a AASB fact sheet for distribution during the informed consent process. The fact sheet could describe information about the AASB, the process of banking specimens, and participant rights in studies using banked specimens.
Consider requiring tiered informed consent on sample use and destruction.
Results were shared with research development partners as well as with members of the communities where the data was gathered.
Findings may influence the policies of the AASB and provide insight to other biobanks with specimens from Alaska Native people.
INTRODUCTION
DISCUSSION
Biological samples have been used in research studies in Alaska for more than 60 years.
Unused portions of research samples and clinical samples from 1948 to present are currently stored in a specimen bank called the Alaska Area Specimen Bank (AASB).
Following the Indian Self Determination Act, Alaska Native Tribal Health Organizations (THO) have assumed management of their healthcare system and in 2004, they assumed shared ownership of the AASB.
The AASB has advanced the understanding of Alaska Native people's health, however, important ethical and cultural considerations arise with the use of stored Alaska Native (AN) specimens for research.
To date, there are no in-depth accounts of AN perspectives, despite a rich history of biobanking research.
The research team which consisted of employees of a tribal health organization.
Research can be used as a tool to improve health disparities in minority populations however, if researchers do not include with research in their research setting, they may continue to be viewed as untrustworthy and exploitive.
These findings may help spur researchers to work more closely with communities to understand concerns and desires for health benefit when developing research projects.
For more information
Vanessa Hiratsuka, MPH
Southcentral Foundation- Research Department
Phone: (907)
Website:
This project was funded by the Native American Research Centers for Health from the Indian Health Service with support from the National Human Genome Research Institute.
2004
2005
2006
2007
2008
2009
2010
AASBWG Formed
Research plan developed
Proposal submitted to NHGRI
Start of funding
Protocol undergoes IRB and tribal approval
Pilot test
Recruit THO partners
Focus groups conducted
Policy recommendations provided to AASBWG
Results dissemination to partnering communities