TY - JOUR
T1 - A framework for enhancing ethical genomic research with Indigenous communities
AU - Summer internship for INdigenous peoples in Genomics (SING) Consortium
AU - Claw, Katrina G.
AU - Anderson, Matthew Z.
AU - Begay, Rene L.
AU - Tsosie, Krystal S.
AU - Fox, Keolu
AU - Garrison, Nanibaa’ A.
AU - Bader, Alyssa C C.
AU - Bardill, Jessica
AU - Bolnick, Deborah A A.
AU - Brooks, Jada
AU - Cordova, Anna
AU - Malhi, Ripan S.
AU - Nakatsuka, Nathan
AU - Neller, Angela
AU - Raff, Jennifer A A.
AU - Singson, Jamie
AU - TallBear, Kim
AU - Vargas, Tada
AU - Yracheta, Joseph M.
N1 - Funding Information:
We would like to thank the teachers, advocates, mentors, and elders who have come before us, and who have taught and supported us along the way. We would like to thank Drs. Wylie Burke, Benjamin Wilfond, Deborah Nickerson, Jean Dennison, and Joshua Reid for their helpful feedback on our manuscript. Dr. Pilar Ossorio provided the space and support for the Summer internship for INdigenous peoples in Genomics (SING) alumni conference where the SING Consortium was created and where ideas emerged. The SING workshops and SING Consortium were supported by the National Institutes of Health (NIH) grant NHGRI R25 HG007158, and the National Science Foundation grant BCS 1518026. K.G.C. was supported by NIH NIGMS F32 GM119237, K.S.T. was supported by NIH NIGMS P20 GM103442, K.F. was supported by NIH NIGMS K12 GM068524, and N.A.G. was supported by NIH NHGRI K01 HG008818.
Publisher Copyright:
© 2018, The Author(s).
PY - 2018/12/1
Y1 - 2018/12/1
N2 - Integration of genomic technology into healthcare settings establishes new capabilities to predict disease susceptibility and optimize treatment regimes. Yet, Indigenous peoples remain starkly underrepresented in genetic and clinical health research and are unlikely to benefit from such efforts. To foster collaboration with Indigenous communities, we propose six principles for ethical engagement in genomic research: understand existing regulations, foster collaboration, build cultural competency, improve research transparency, support capacity building, and disseminate research findings. Inclusion of underrepresented communities in genomic research has the potential to expand our understanding of genomic influences on health and improve clinical approaches for all populations.
AB - Integration of genomic technology into healthcare settings establishes new capabilities to predict disease susceptibility and optimize treatment regimes. Yet, Indigenous peoples remain starkly underrepresented in genetic and clinical health research and are unlikely to benefit from such efforts. To foster collaboration with Indigenous communities, we propose six principles for ethical engagement in genomic research: understand existing regulations, foster collaboration, build cultural competency, improve research transparency, support capacity building, and disseminate research findings. Inclusion of underrepresented communities in genomic research has the potential to expand our understanding of genomic influences on health and improve clinical approaches for all populations.
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U2 - 10.1038/s41467-018-05188-3
DO - 10.1038/s41467-018-05188-3
M3 - Review article
C2 - 30054469
AN - SCOPUS:85050790273
SN - 2041-1723
VL - 9
JO - Nature communications
JF - Nature communications
IS - 1
M1 - 2957
ER -