Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts

Caron, Nadine R.; Chongo, Meck; Hudson, Māui; Arbour, Laura; Wasserman, Wyeth W.; Robertson, Stephen; Correard, Solenne; Wilcox, Phillip

doi:10.3389/fpubh.2020.00111

Cited by 57 publications

(58 citation statements)

References 29 publications

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“…Another Australian initiative includes the work of the Telethon Kids Institute to deliver the first whole-exome genomic reference data, and related data access processes, initiating with Western Desert People of Western Australia ( 40 ). In Canada, the Silent Genomes project launched in 2018 with the goals of reducing health-care disparities and improving diagnostic success for Indigenous children with genetic diseases plans the development of a database of background genetic variations for Indigenous populations from across Canada ( 49 , 50 ). In Aotearoa/New Zealand, a similar initiative has commenced, with the goal of developing a catalog of genetic variants within Indigenous Māori, to expedite identification of causative variants and disease diagnoses, as well as development of gene-based diagnostics ( 51 ).…”

Section: Introductionmentioning

confidence: 99%

“…In Aotearoa/New Zealand, a similar initiative has commenced, with the goal of developing a catalog of genetic variants within Indigenous Māori, to expedite identification of causative variants and disease diagnoses, as well as development of gene-based diagnostics ( 51 ). Like the Silent Genomes project, this is co-led by Indigenous researchers and guided by Indigenous ethical frameworks relevant to the study populations ( 50 ).…”

Section: Introductionmentioning

confidence: 99%

“…SING operates internationally through the expanding network of the SING Consortium and has organized earlier this year the first international conference on Indigenous genomics ( 103 ). Capacity building in genomic science for Indigenous communities is also being supported through programs and translational activities associated with Silent Genomes and the Aotearoa Variome ( 50 ).…”

Section: Introductionmentioning

confidence: 99%

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Barriers and Considerations for Diagnosing Rare Diseases in Indigenous Populations

D’Angelo¹,

Hermes

McMaster

et al. 2020

Front. Pediatr.

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Advances in omics and specifically genomic technologies are increasingly transforming rare disease diagnosis. However, the benefits of these advances are disproportionately experienced within and between populations, with Indigenous populations frequently experiencing diagnostic and therapeutic inequities. The International Rare Disease Research Consortium (IRDiRC) multi-stakeholder partnership has been advancing toward the vision of all people living with a rare disease receiving an accurate diagnosis, care, and available therapy within 1 year of coming to medical attention. In order to further progress toward this vision, IRDiRC has created a taskforce to explore the access barriers to diagnosis of rare genetic diseases faced by Indigenous peoples, with a view of developing recommendations to overcome them. Herein, we provide an overview of the state of play of current barriers and considerations identified by the taskforce, to further stimulate awareness of these issues and the passage toward solutions. We focus on analyzing barriers to accessing genetic services, participating in genomic research, and other aspects such as concerns about data sharing, the handling of biospecimens, and the importance of capacity building.

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Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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Barriers and Considerations for Diagnosing Rare Diseases in Indigenous Populations

D’Angelo¹,

Hermes

McMaster

et al. 2020

Front. Pediatr.

Self Cite

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“…One example is the need for data governance systems to respond to growing demands for Indigenous data sovereignty. 65 For example, New Zealand has a centralised research database called the Integrated Data Infrastructure (IDI) holding comprehensive microdata about people, households and businesses and governed by Statistics New Zealand (Stats NZ). 66 In response to local concerns about control over the use of Māori data, Stats NZ has adopted an additional layer of review for research using Māori data, called Ngā Tikanga Paihere.…”

Section: Building Trustworthy Governancementioning

confidence: 99%

“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore

Lysaght

Ballantyne

Xafis

et al. 2020

Preprint

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Background We aimed to examine the ethical concerns Singaporeans have about sharing health-data for precision medicine (PM) and identify suggestions for governance strategies. Just as Asian genomes are under-represented in PM, the views of Asian populations about the risks and benefits of data sharing are under-represented in prior attitudinal research.Methods We conducted seven focus groups with 62 participants in Singapore from May to July 2019. They were conducted in three languages (English, Mandarin and Malay) and analysed with qualitative content and thematic analysis. Results Four key themes emerged: nuanced understandings of data security and data sensitivity; trades-offs between data protection and research benefits; trust (and distrust) in the public and private sectors; and governance and control options. Participants were aware of the inherent risks associated with data sharing for research. Participants expressed conditional support for data sharing, including genomic sequence data and information contained within electronic medical records. This support included sharing data with researchers from universities and healthcare institutions, both in Singapore and overseas. Support was conditional on the perceived social value of the research and appropriate de-identification and data security processes. Participants suggested that a data sharing oversight body would help strengthen public trust and comfort in data research for PM in Singapore.Conclusion Maintenance of public trust in data security systems and governance regimes can enhance participation in PM and data sharing for research. Contrary to themes in much prior research, participants demonstrated a sophisticated understanding of the inherent risks of data sharing, analysed trade-offs between risks and potential benefits of PM, and often adopted an international perspective.

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“…There are a growing number of Indigenous-led precision medicine initiatives to draw guidance from. Guided by Indigenous governance structures, the Silent Genomes Project in Canada and the Aotearoa Variome in Aotearoa/New Zealand are developing background variant libraries of Indigenous genomes (Caron et al 2020). Additionally, the Native BioData Consortium was created by Indigenous scientific and bioethics experts to proximally keep Indigenous research samples and data within the provenance and governance of Indigenous communities (Native BioData Consortium 2020).…”

mentioning

confidence: 99%

We Have “Gifted” Enough: Indigenous Genomic Data Sovereignty in Precision Medicine

Tsosie

Yracheta

Kolopenuk

et al. 2021

The American Journal of Bioethics

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Indigenous Genomic Databases: Pragmatic Considerations and Cultural Contexts

Cited by 57 publications

References 29 publications

Barriers and Considerations for Diagnosing Rare Diseases in Indigenous Populations

Barriers and Considerations for Diagnosing Rare Diseases in Indigenous Populations

“Who is watching the watchdog?”: ethical perspectives of sharing health-related data for precision medicine in Singapore

We Have “Gifted” Enough: Indigenous Genomic Data Sovereignty in Precision Medicine

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