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Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data

Abstract

Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.

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Fig. 1: Principles proposed to support greater Indigenous diversity and inclusion in genomic research.

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Acknowledgements

The authors acknowledge the learnings gained from the various Indigenous communities that they have partnered with in research. They also acknowledge the SING (Summer internship for INdigenous peoples in Genomics) networks, the Centre for the Ethics of Indigenous Genomics Research and the Indigenous Data Sovereignty networks, including the Global Indigenous Data Alliance, for the contributions they make towards generating new ideas and scholarship in this area.

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R.S. researched data for the article. M.H., N.A.G., N.R.C., K.F., J.Y., J.A., P.W., L.A., A.B., M.T., T.K., R.H., B.T.A., G.S.B., P.K.D., D.C., R.S.M., I.G., N.T., D.B., M.S., A.K.R., L.L.B., R.L., D.D.-C., A.M., A.S., M.W., J.R. and S.R.C. substantially contributed to discussion of content. M.H., N.A.G., R.S. and S.R.C. wrote the manuscript. M.H., N.A.G., N.R.C., K.F., J.Y., J.A., P.W., L.A., A.B., M.T., T.K., R.H., B.T.A., G.S.B., P.K.D., D.C., R.S.M., I.G., N.T., M.S., A.K.R., L.L.B., R.L., D.D.-C., A.M., A.S., M.W., J.R. and S.R.C. contributed to reviewing/editing the manuscript before submission.

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Correspondence to Maui Hudson.

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J.Y. and K.F. are executive board members of the Native BioData Consortium biorepository (501.C.3 non-profit). The other authors declare no competing interests.

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Hudson, M., Garrison, N.A., Sterling, R. et al. Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nat Rev Genet 21, 377–384 (2020). https://doi.org/10.1038/s41576-020-0228-x

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