Skip to main content
Download PDF

Volume 9 Supplement 2

AIDS Vaccine 2012

  • Oral presentation
  • Open access
  • Published:

Social and ethical considerations in engaging American Indian and Alaska Native communities in HIV clinical research

Retrovirology volume 9, Article number: O26 (2012) Cite this article

Background

American Indians and Alaska Natives (AI/AN) have the 4th highest rate of new HIV diagnoses among racial/ethnic groups and the highest mortality rate after an AIDS diagnosis (CDC, 2012), yet continue to be underrepresented in HIV clinical research trials due to historical and cultural factors. This presentation will highlight social and ethical experiences that contribute to mistrust of Western research and medicine and low involvement in HIV clinical research trials, and provide effective strategies for respectfully engaging Native communities.

The presentation will also describe the Native American Engagement in HIV Clinical Research (NAEHCR) project, a pilot aimed at increasing awareness and engagement in HIV clinical research with urban Indigenous communities using a participatory framework. NAEHCR was developed in partnership between the National Native American AIDS Prevention Center and the Legacy Project. NAEHCR is currently being conducted with DAIDS-funded research sites in Seattle, USA (HVTU, ACTU) and Denver, USA (HVTU, INSIGHT).

Methods

Formative research assessed awareness, barriers, and facilitators of involvement in HIV clinical research using qualitative and quantitative methods. Focus groups were held with Native advisory boards to explore perceptions and experiences with clinical research. Individual interviews were conducted with clinical research site staff to assess perceptions and experiences with AI/AN communities. Surveys used to assess AI/AN community members’ awareness and experiences around clinical research.

Results

Initial results indicate high levels of interest in the project among AI/AN community members and clinical research staff. Results also indicate low levels of awareness and engagement in HIV clinical research among the AI/AN community and a disconnect between the AI/AN community and HIV clinical research sites.

Conclusion

Using a multi-method participatory approach offers a holistic depiction of barriers, opportunities for engagement, and important considerations when engaging AI/AN communities in HIV clinical research given the social and ethical legacy of research conducted in AI/AN communities.

Author information

Authors and Affiliations

  1. Fred Hutchinson Cancer Research Center, Seattle, WA, USA

    J Velcoff & DL Humes

  2. National Native American AIDS Prevention Center, Denver, CO, USA

    R Foley & M Ignacio

Authors
  1. J Velcoff
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. DL Humes
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. R Foley
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. M Ignacio
    View author publications

    You can also search for this author in PubMed Google Scholar

Rights and permissions

This article is published under license to BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

Reprints and permissions

About this article

Cite this article

Velcoff, J., Humes, D., Foley, R. et al. Social and ethical considerations in engaging American Indian and Alaska Native communities in HIV clinical research. Retrovirology 9 (Suppl 2), O26 (2012). https://doi.org/10.1186/1742-4690-9-S2-O26

Download citation

  • Published:

  • DOI: https://doi.org/10.1186/1742-4690-9-S2-O26

Keywords

Retrovirology

ISSN: 1742-4690

Contact us