The overarching principles of the collection and storage of Indigenous biospecimens as part of the CAHHM study is to acknowledge that the participants and their community are the ultimate owners of the samples.
The biospecimens collected as part of this study are securely stored at the Clinical Research Laboratory and Biobank (CLRB), an IQMH ISO15189 accredited laboratory in Hamilton, Ontario. In order to maintain specimen stability, the vast majority of biospecimens are stored long-term in nitrogen vapour which achieve much colder temperatures and depend minimally on external power.
The Alliance National Aboriginal Working Group (NAWG) oversees the the storage and use of biospecimens and data. In order to ensure that the individual participants’ values and interested are full respected, the NAWG includes at least one representative from each community. Any data generated from the Alliance samples will be stored on a secure server at the CRLB and Population Health Research Institute, and will be stewarded by Dr. Sonia Anand.
For most communities the Alliance Consent states that biospecimens will be stored for 25 years (some communities chose for samples to be destroyed after testing). After 25 years, each community can decide whether they would like the samples returned, continue to be stored, or destroyed in a ceremony at the Biobank informed by Indigenous elders. Participants and their community are the ultimate owners of the sample, and it is considered to be “on loan” to us for the purpose of this research.
Additional information can be found in our Alliance Biospecimen SOP.