Publications
IWRI
Publications
2014
PhD, Rosalina James; JD, Rebecca Tsosie; MD, Puneet Sahota; PhD,; PhD, Myra Parker; JD,; MA, Denise Dillard; PhD,; Sylvester, Ileen; Lewis, John; MD, Joseph Klejka; MD, LeeAnna Muzquiz; BA, Polly Olsen; JD, Ron Whitener; MD, Wylie Burke; PhD,; for the Kiana Group,
Exploring pathways to trust: a tribal perspective on data sharing Journal Article
In: Genetics in Medicine, 2014, ISSN: 1098-3600.
Abstract | Links | BibTeX | Tags: Olsen P, Parker M.
@article{PhD2014,
title = {Exploring pathways to trust: a tribal perspective on data sharing},
author = {Rosalina James PhD and Rebecca Tsosie JD and Puneet Sahota MD and PhD and Myra Parker PhD and JD and Denise Dillard MA and PhD and Ileen Sylvester and John Lewis and Joseph Klejka MD and LeeAnna Muzquiz MD and Polly Olsen BA and Ron Whitener JD and Wylie Burke MD and PhD and for the Kiana Group},
url = {http://dx.doi.org/10.1038/gim.2014.47},
issn = {1098-3600},
year = {2014},
date = {2014-05-15},
journal = {Genetics in Medicine},
abstract = {The data-sharing policies of the National Institutes of Health aim to maximize public benefit derived from genetic studies by increasing research efficiency and use of a pooled data resource for future studies. Although broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports the tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data-sharing procedures that take into account tribal sovereignty and appropriate oversight of research[mdash]such as tribally based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by the National Institutes of Health as part of the research process.},
keywords = {Olsen P, Parker M.},
pubstate = {published},
tppubtype = {article}
}
The data-sharing policies of the National Institutes of Health aim to maximize public benefit derived from genetic studies by increasing research efficiency and use of a pooled data resource for future studies. Although broad access to data may lead to benefits for populations underrepresented in genetic studies, such as indigenous groups, tribes have ownership interest in their data. The Northwest-Alaska Pharmacogenetic Research Network, a partnership involving tribal organizations and universities conducting basic and translational pharmacogenetic research, convened a meeting to discuss the collection, management, and secondary use of research data, and of the processes surrounding access to data stored in federal repositories. This article reports the tribal perspectives that emerged from the dialogue and discusses the implications of tribal government sovereign status on research agreements and data-sharing negotiations. There is strong tribal support for efficient research processes that expedite the benefits from collaborative research, but there is also a need for data-sharing procedures that take into account tribal sovereignty and appropriate oversight of research[mdash]such as tribally based research review processes and review of draft manuscripts. We also note specific ways in which accountability could be encouraged by the National Institutes of Health as part of the research process.
C.R., Pearson; Parker, M.; C., Fisher; Moreno, C.
In: Journal of Empirical Research on Human Research Ethics, vol. 9, no. 1, 2014.
Links | BibTeX | Tags: Parker M., Pearson C. R.
@article{C.R2014,
title = {Capacity Building from the Inside Out: A Randomized Control Trial on Adapting the CITI Ethics Certification Training Course for American Indian Community Researchers},
author = {Pearson C.R. and Parker, M. and Fisher C. and Moreno, C. },
url = {http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4004423/},
year = {2014},
date = {2014-02-03},
journal = {Journal of Empirical Research on Human Research Ethics},
volume = {9},
number = {1},
keywords = {Parker M., Pearson C. R.},
pubstate = {published},
tppubtype = {article}
}
