Origin: A Genetic History of the Americas

focus on regions where consent is more clear-cut or easier to obtain.
This situation is not going to be resolved by expectations (or demands)
for tribes to give scientists more genomes; one doesn’t build trust that way.
And yet, Krystal Tsosie, a Navajo (Diné) geneticist and bioethicist, told me
that she attended a conference in early 2019 where a researcher asked her,
quite seriously, “What’s the magic formula for recruiting Native American
participants?” v Others have joked to her about their extensive Native DNA
biobanks collected in the past, before tribes had put into place restrictions.
She sees attitudes like these and many of the examples discussed above as
unified by a common theme: the presumption that the research enterprise’s
outcomes justify the means by which samples are obtained. “There’s just
this sense of white ownership of our Indigenous biological samples,” she
told me. “In some of the more recent controversies you see non-Indigenous
researchers enter into Indigenous spaces. They collect samples and have
complete stewardship over them, using them for whatever they deem
appropriate,” rather than working with tribes themselves to determine how
they should be used.
Historically, there has been a decided lack of benefits to Indigenous
groups that have participated in genetics studies. Criticisms of open-access
genomic data have cited this—among other concerns discussed in this
chapter—as a reason for the lack of tribal participation in genomics studies.
There have been number of initiatives, such as Indigenous-led biobanks and
data repositories like the Native BioData Consortium that prioritize active,
ongoing consultation with participants, that show great promise for
improving the balance of power and benefits between researchers and
communities (33).
Pathways Forward
Results from genetics research can have powerful consequences for
Indigenous communities, both beneficial and detrimental. Scientific
research that uses human DNA doesn’t take place in a vacuum. Genetics
studies can be used to argue against tribal histories, potentially threaten
sovereignty, or dispute cultural identities. They can be used in ways that
benefit outside researchers at the expense of tribal members and potentially