National Centre for Indigenous Genomics (NCIG), Australian National University, Canberra, Australian Capital Territory, Australia.
Sydney Health Ethics, The University of Sydney, Sydney, New South Wales, Australia.
Intern Med J. 2021 Sep;51(9):1426-1432. doi: 10.1111/imj.15223.
Biobanks are vital resources for genetics and genomics, and it is broadly recognised that for maximal benefit it is essential that they include samples and data from diverse ancestral groups. The inclusion of First Nations people, in particular, is important to prevent biobanking research from exacerbating existing health inequities, and to ensure that these communities share in the benefits arising from research.
To explore the perspectives of Australian Aboriginal people whose tissue - or that of their family members - has been stored in the biobank of the National Centre for Indigenous Genomics (NCIG).
Semi-structured interviews with 42 Aboriginal people from the Titjikala, Galiwinku, Tiwi Islands, Yarrabah, Fitzroy Crossing, Derby, One Arm Point and Mulan communities, as well as a formal discussion with A. Hermes, an Indigenous Community Engagement Coordinator at the NCIG who had conducted the interviews. The interviews and the structured discussion were double coded using a procedure informed by Charmaz's outline of grounded theory analysis and Morse's outline of the cognitive basis of qualitative research.
In this article, we report on A. Hermes' interviews with members from the above Aboriginal communities, as well as on her personal views, experiences, and interpretations of the interviews she conducted with other community members. We found that participation in the NCIG biobank raised issues around broken trust, grief and loss, but also - somewhat unexpectedly - was perceived as a source of empowerment, hope and reconnection.
This research reminds us (again) of the need to engage deeply with communities in order to respond appropriately with respect for their cultural values and norms, and to develop culturally relevant policies and processes that enhance the benefits of biobank participation and minimise potential harms.
生物库对于遗传学和基因组学至关重要，人们普遍认识到，为了实现最大效益，生物库必须包括来自不同祖先群体的样本和数据。特别纳入原住民，对于防止生物库研究加剧现有的健康不平等现象，以及确保这些社区从研究中受益，是非常重要的。
探讨澳大利亚原住民的观点，他们的组织或其家庭成员的组织已被存储在国家原住民基因组学中心（NCIG）的生物库中。
对来自 Titjikala、Galiwinku、Tiwi Islands、Yarrabah、Fitzroy Crossing、Derby、One Arm Point 和 Mulan 社区的 42 名原住民进行半结构化访谈，以及与 A. Hermes 进行正式讨论，A. Hermes 是 NCIG 的一名原住民社区参与协调员，他进行了这些访谈。访谈和结构化讨论使用 Charmaz 提出的扎根理论分析概述和 Morse 提出的定性研究认知基础概述的程序进行双重编码。
在本文中，我们报告了 A. Hermes 对上述原住民社区成员的访谈，以及她对自己与其他社区成员进行的访谈的个人观点、经验和解释。我们发现，参与 NCIG 生物库引发了一些问题，包括信任破裂、悲伤和失落，但也出乎意料地被视为赋权、希望和重新联系的源泉。
这项研究再次提醒我们，需要与社区进行深入接触，以尊重他们的文化价值观和规范做出适当回应，并制定文化相关的政策和程序，以增强生物库参与的益处并最大限度地减少潜在的危害。
