Community engagement for development of CDC policy governing management of specimens obtained from American Indian/Alaska Native (AI/AN) populations
In the course of developing a comprehensive specimen policy, CDC identified a need for unique provisions to manage AI/AN specimens. Moreover, examples of research misconduct (e.g., the recent Havasupai case) have highlighted the need for explicit policies governing AI/AN specimens.
CDC’s goal is to develop policies for ethical and culturally responsive management of AI/AN specimens during all phases of custody from collection to respectful disposition. Therefore, CDC’s Office of Public Health Scientific Services (OPHSS) and the Office for State, Tribal, Local and Territorial Support (OSTLTS) are employing a multi-pronged strategy including purposeful community engagement to ensure consideration of AI/AN values and concerns. Multiple ongoing community dialogues and listening sessions (e.g., Native Research Network Conference, Denver Indian Center) are being conducted in partnership with the Association of American Indian Physicians (AAIP). Moreover, AAIP has facilitated composition of background papers by external experts to inform policy development. The papers discuss socio-cultural factors; legal and ethical issues; tribal models and policies; and relevant international guidelines.
The presentation will summarize information gathered from community engagement efforts and multidisciplinary expert input. The views expressed reflect the importance of respect for AI/AN specimens and participation in a transparent AI/AN specimen policy development process.
Learning Areas:Diversity and culture
Public health or related laws, regulations, standards, or guidelines
Public health or related public policy
List 3 uses of specimens at the Centers for Disease Control and Prevention (CDC). Describe 3 issues raised by American Indian/Alaska Native (AI/AN) individuals regarding the use of their specimens for public health purposes.
Qualified on the content I am responsible for because: I have training in international human rights law and bioethics, with a focus on biomedical research and health in indigenous and LMIC populations. I also recently completed a health policy fellowship with the Satcher Health Leadership Institute (Morehouse School of Medicine). I have been involved with the AI/AN specimen policy project both as a Satcher Fellow and currently as an ORISE Research Participant.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.