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Too many people falsely assume "open #data" will "democratize" #science and its benefits, while the #Indigenous people most disenfranchised continually call into question these practices: https://onlinelibrary.wiley.com/doi/10.1002/ajpa.24184
@amjphysanth @kstsosie @YrachetaJM @JessKolopenuk @rickwasmith
1/8
@amjphysanth @kstsosie @YrachetaJM @JessKolopenuk @rickwasmith
1/8
"... #data practices that seemingly bolster scientific progress have often come at the expense of #Indigenous peoples, who seldomly benefit from #research conducted within and about their communities."
Therefore changing the field ALSO means changing the POWER dynamics
2/8
Therefore changing the field ALSO means changing the POWER dynamics
2/8
"If democratization only maximizes benefit for the greatest
number of individuals, then unfortunately, #Indigenous peoples will... bear disproportional burdens of risk under the auspices of the 'greater good'"
Think of the scientific harms perpetrated for the "greater good" 3/8
number of individuals, then unfortunately, #Indigenous peoples will... bear disproportional burdens of risk under the auspices of the 'greater good'"
Think of the scientific harms perpetrated for the "greater good" 3/8
The current standard of “informed consent” and “confidentiality” is inadequate for #data generation involving Indigenous people, who align with a more collective ethic.
Considering #DNA is a group identifier, EVERYONE should Q the inadequacy of current consent standards, too 4/8
Considering #DNA is a group identifier, EVERYONE should Q the inadequacy of current consent standards, too 4/8
Some researchers use "increasing #inclusion of underrepresented groups in #research" carte blanche in which THEY (NOT COMMUNITIES) define anything they want as “engagement” 
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Community-engaged research is not an "ethical fix" if we do not also re-center #data and power 5/8
. Community-engaged research is not an "ethical fix" if we do not also re-center #data and power 5/8
We must not fall into the cult of "open data" as an ethical solution to bridging #health #equity if the power dynamics related to that #data generation are also not changed. 6/8
Support Indigenous-led data efforts like
@NativeBio, @adhbrown at @sahmriAU, @GenomicsNZ,
@indigenomics. Follow Indigenous academics who write on Indigenous data sovereignty like @scbegonias @native4data @Paps_R @pdub14493350 @thkukutai and the co-authors on this paper. 7/8
@NativeBio, @adhbrown at @sahmriAU, @GenomicsNZ,
@indigenomics. Follow Indigenous academics who write on Indigenous data sovereignty like @scbegonias @native4data @Paps_R @pdub14493350 @thkukutai and the co-authors on this paper. 7/8
I am happy to email the full-length article to anyone interested, just DM. Also, my @iscb talk "'Open Access' #Data and the Continued Bio-Exploitation of #Indigenous Genomes" is this week on 12/10 at 11 AM EST. https://iscb.org/iscbacademy-upcoming#tsosie DNA 8/8
