No abstract

People are living longer because of advances made through biomedical research. The challenge in genetic research on indigenous peoples is that it raises a complex range of legal, ethical, social, spiritual, and political issues. The current research paradigm is one of paternalism and biocolonialism. Such was the case of the Havasupai, who believed their blood samples were to be solely used for their collective benefit and well-being, and Native Hawaiians, who are opposed to genetically modified taro. Pertinent questions that should be considered before conducting research with and amongst Native communities include: Is there informed consent or the need for re-consent? Is cultural knowledge respected? Are indigenous beliefs, values, and practices taken into account? Is there potential for group harm? Is there accountability to community? Establishing a community Institutional Review Board may be the most effective means toward achieving equal and ethical treatment in population/group-based research. Research should be about ethically rigorous processes and effectively tailored interventions that address community needs, interests, and values.

Background-Native Hawaiians have high smoking prevalence and high lung cancer mortality rates.

Introduction: In 2005, the National Cancer Institute funded the Community Networks Program (CNP), which aimed to reduce cancer health disparities in minority racial/ethnic and underserved groups through community-based participatory research, education, and training. The purpose of this study was to describe the CNP model and their tobacco-related work in community-based research, education, and training using a tobacco disparities research framework. Methods: We conducted a comprehensive review of the CNP tobacco-related activities including publications, published abstracts, research activities, trainee pilot studies, policy-related activities, educational outreach, and reports produced from [2005][2006][2007][2008][2009]. Two authors categorized the tobaccorelated activities and publications within the framework. Results: Although there was no mandate to address tobacco, the CNPs produced 103 tobaccorelated peer-reviewed publications, which reflects the largest proportion (12%) of all CNP cancerrelated publications. Selected publications and research activities were most numerous under the framework areas "Psychosocial Research, " "Surveillance, " "Epidemiology, " and "Treatment of Nicotine Addiction. " Thirteen CNPs participated in tobacco control policymaking in mainstream efforts that affected their local community and populations, and 24 CNPs conducted 1147 tobacco-related educational outreach activities. CNP activities that aimed to build research and infrastructure capacity included nine tobacco-related pilot projects representing 16% of all CNP cancer-related pilot projects, and 17 publications acknowledging leveraged partnerships with other organizations, a strategy encouraged by the CNP.