Santos Lorrieann
Imi Hale, Native Hawaiian Cancer Network, Papa Ola Lokahi.
Prog Community Health Partnersh. 2008 Winter;2(4):321-7. doi: 10.1353/cpr.0.0046.
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.
由于生物医学研究取得的进展，人们的寿命越来越长。对原住民进行基因研究面临的挑战在于，它引发了一系列复杂的法律、伦理、社会、精神和政治问题。当前的研究模式是家长式作风和生物殖民主义。哈瓦苏派人就是如此，他们认为自己的血样仅应用于他们的集体利益和福祉，还有夏威夷原住民，他们反对转基因芋头。在与原住民社区开展研究以及在原住民社区内部开展研究之前，应该考虑的相关问题包括：* 是否有知情同意或重新获得同意的必要？* 文化知识是否得到尊重？* 是否考虑了原住民的信仰、价值观和习俗？* 是否有可能对群体造成伤害？* 是否对社区负责？建立社区机构审查委员会可能是在基于人群/群体的研究中实现平等和道德对待的最有效手段。研究应该围绕符合道德规范的严谨过程以及有效满足社区需求、利益和价值观的针对性干预措施展开。
