scholarly journals Literature review and ethnohistory of Native American occupancy and use of the Yucca Mountain Region; Yucca Mountain Project, Interim report

1990 ◽  
Author(s):  
R. Stoffle ◽  
J. Olmsted ◽  
M. Evans
Keyword(s):  
Native American ◽  
Literature Review ◽  
Yucca Mountain ◽  
Mountain Region ◽  
Interim Report

scholarly journals A systematic literature review of Native American and Pacific Islanders’ perspectives on health data privacy in the United States

2020 ◽  
Vol 27 (12) ◽  
pp. 1987-1998
Author(s):  
Riley Taitingfong ◽  
Cinnamon S Bloss ◽  
Cynthia Triplett ◽  
Julie Cakici ◽  
Nanibaa’ Garrison ◽  
...  
Keyword(s):  
Native American ◽  
Literature Review ◽  
Systematic Literature Review ◽  
Alaska Native ◽  
Health Research ◽  
Data Privacy ◽  
Indigenous Communities ◽  
The United States ◽  
Health Data ◽  
Willingness To Participate

Abstract Background Privacy-related concerns can prevent equitable participation in health research by US Indigenous communities. However, studies focused on these communities' views regarding health data privacy, including systematic reviews, are lacking. Methods We conducted a systematic literature review analyzing empirical, US-based studies involving American Indian/Alaska Native (AI/AN) and Native Hawaiian or other Pacific Islander (NHPI) perspectives on health data privacy, which we define as the practice of maintaining the security and confidentiality of an individual’s personal health records and/or biological samples (including data derived from biological specimens, such as personal genetic information), as well as the secure and approved use of those data. Results Twenty-one studies involving 3234 AI/AN and NHPI participants were eligible for review. The results of this review suggest that concerns about the privacy of health data are both prevalent and complex in AI/AN and NHPI communities. Many respondents raised concerns about the potential for misuse of their health data, including discrimination or stigma, confidentiality breaches, and undesirable or unknown uses of biological specimens. Conclusions Participants cited a variety of individual and community-level concerns about the privacy of their health data, and indicated that these deter their willingness to participate in health research. Future investigations should explore in more depth which health data privacy concerns are most salient to specific AI/AN and NHPI communities, and identify the practices that will make the collection and use of health data more trustworthy and transparent for participants.

Sign in / Sign up

Export Citation Format

Share Document