TABLE 1.
Data control | Who will control the data? Where will it be stored, will it be secure, and will personal privacy and identity be protected? |
Data sharing | Who has access to the information? What are the research questions and do they reflect Native people’s concerns? |
Benefits of research | Is the research relevant to Native people, will it have a measurable positive impact on Native health outcomes, and will Native people have access (e.g., cost, geography) to the treatments or prevention strategies that might result from the research? Will research provide more knowledge about Chickasaw health and disease (particularly high rates of diabetes) and yield better treatments and prevention strategies? Will the research provide benefits to society at large? Opportunities for Native researchers to train for and conduct this type of research. |
Necessity of research | Is genetic research necessary to address the condition/disease being studied? Questions about the value and relevance of studying Native Americans. |
Misuse of genetic information | Could it be used to discriminate against individuals (e.g., insurance or employment) or against Chickasaw people (stigmatization of entire group), or against humanity? |
Immoral uses of genetic research | Could it be used to alter biological life (human and non-human) in ways that transgress moral boundaries or “play God”? |