TABLE 2.
Consent | How would consent for use of data be handled? Would the individual have the opportunity to be informed about and consent to each new use? Would tribal review of secondary uses provide adequate protection? Would an approach to consent other than individual or tribal consent provide adequate protections (e.g., based on type of research or disease)? |
Data sharing | Who decides who has access to the information and which researchers will be given access? What are the researchers studying and is it in Native people’s best interest? |
Long-term storage | Why do data need to be stored long-term? Would long-term storage increase the risk of misuse? |
Privacy | Will individual privacy and confidentiality be secured and protected against misuse (e.g., discrimination in employment or health/life insurance)? |
Cost/opportunity costs | How much would it cost to build, maintain, and secure a Chickasaw biobank? Would these costs distract from other worthy investments in Chickasaw people and programs? |
Psychological burdens | Would genetic information about self or family cause psychological harms (e.g., distress, fear, anger, and sadness)? |
Health benefits | 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 advancement of Chickasaw Nation | Biobanks may provide opportunities to build infrastructure and capacity, create jobs and bring leading Chickasaw researchers back home to the region, advance ground-breaking research, and alleviate mistrust. |