The Orang Asli Health and Lifeways Project’s highest priority is to minimize risk to study participants. As such, OA HeLP adheres to the “CARE Principles for Indigenous Data Governance” (Collective Benefit, Authority to Control, Responsibility, and Ethics) and we are also committed to the “FAIR Guiding Principles for scientific data management and stewardship” (Findable, Accessible, Interoperable, Reusable). To adhere to these principles while minimizing risks, individual-level data are stored in protected data repositories and are available through restricted access. Requests for de-identified, individual-level data should take the form of an application that details the exact uses of the data and the research questions to be addressed, procedures that will be employed for data security and individual privacy, potential benefits to the study communities, and procedures for assessing and minimizing stigmatizing interpretations of the research results. Requests for de-identified, individual-level data will require institutional IRB approval (even if exempt). OA HeLP is committed to open science and the project leadership is available to assist interested investigators in preparing data access requests. Requests for data access can be made using the form below (please return to orang.asli.health [at] gmail.com)
Our data user agreement can be found here.
Our data user agreement can be found here.