Weighing Harms and Benefits: Alaska Native Perspectives on the Risks and Benefits of Research with Biological Specimens

Purpose: Banking biological specimens can lead to important health advances however important cultural and ethical considerations can arise, especially among indigenous populations. Community members and leaders in Alaska Native communities have many thoughts about the harms and benefits of research that may inform biobank policy.

Methods: Alaska Native and American Indian community members and leaders from 14 regions of Alaska participated in focus groups discussing the storage and use of biological specimens in health research. Atlas.ti software was used to compile the range of views across all participants by broad themes. Views related to harms and benefits of research were further analyzed for relevant themes.

Results: Participants generally weighed the benefits and harms to themselves and others when deciding to participate in research where biological samples are collected and stored. Participants articulated general thoughts about the value of research and spoke of the value of research to study specific diseases such as cancer or diabetes. Also discussed was the benefit research could have for future generations and the relevance of the research to their families and communities. Their considerations of harms included unknown future harms, discrimination, and loss of benefits associated with genetic status. Some participants would reference both harms and benefits while weighing the value of research.

Conclusions: Participants referenced multiple specific and general harms and benefits of research when asked to consider research involving specimen banks. Researchers should be aware of these concerns when considering and designing research with Alaska Native communities.