Exploring pathways to trust: a tribal perspective on data sharing

  title={Exploring pathways to trust: a tribal perspective on data sharing},
  author={Rosalina D James and Rebecca Tsosie and Puneet Chawla Sahota and M Elaine Parker and Denise Dillard and Ileen Sylvester and John Lewis and Joseph A Klejka and LeeAnna I. Muzquiz and Polly Olsen and Ron Whitener and Wylie Burke},
  journal={Genetics in Medicine},
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… CONTINUE READING
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