TY - JOUR
T1 - Access and management
T2 - Indigenous perspectives on genomic data sharing
AU - Garrison, Nanibaa A.
AU - Barton, Krysta S.
AU - Porter, Kathryn M.
AU - Mai, Thyvu
AU - Burke, Wylie
AU - Carroll, Stephanie Russo
N1 - Funding Information:
We thank all of the participants who shared their perspectives informed by personal experiences and ancestral knowledge that has been passed down. We thank Dr. Malia Villegas and Sarah Pytalski, formerly at the National Congress of American Indians’ Policy Research Center. We thank Leah Tanner for her dedication and assistance with recruiting and conducting interviews, Devan Duenas for his help with data management and quality, and Nicolas Dundas who assisted with a review of the literature. We thank Drs. Ellen Wright Clayton and Deborah Bowen for their mentorship. This work was supported by the National Human Genome Research Institute (K01 HG008818).
Publisher Copyright:
© 2019 Ethnicity and Disease, Inc.. All rights reserved.
PY - 2019
Y1 - 2019
N2 - As genomic researchers are encouraged to engage in broad genomic data sharing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a community-engaged research approach, we conducted 42 semi-structured interviews with tribal leaders, clinicians, researchers, policy makers, and tribal research review board members about their perspectives on ethical issues related to genetics in AI/AN/NH communities. We report findings related to perspectives on genetic research, data sharing, and envisioning stronger oversight and management of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.
AB - As genomic researchers are encouraged to engage in broad genomic data sharing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a community-engaged research approach, we conducted 42 semi-structured interviews with tribal leaders, clinicians, researchers, policy makers, and tribal research review board members about their perspectives on ethical issues related to genetics in AI/AN/NH communities. We report findings related to perspectives on genetic research, data sharing, and envisioning stronger oversight and management of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.
KW - Genomic data sharing
KW - Tribal sovereignty
UR - http://www.scopus.com/inward/record.url?scp=85077213460&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85077213460&partnerID=8YFLogxK
U2 - 10.18865/ed.29.S3.659
DO - 10.18865/ed.29.S3.659
M3 - Article
C2 - 31889771
AN - SCOPUS:85077213460
VL - 29
SP - 659
EP - 668
JO - Ethnicity and Disease
JF - Ethnicity and Disease
SN - 1049-510X
ER -