Table 2.

Worksheet: Design a Data Stewardship Model for Your Community

TOPIC	QUESTIONS TO CONSIDER
MATERIALS COLLECTED	• What kinds of materials – data and/or biospecimens – should be collected and stored for future research? • Are there any materials that should be off limits?
SPECIAL PROTECTIONS	• Are there any kinds of information or biospecimens that need special protections? • Which ones?
OWNERSHIP	• Who should own these resources once they are collected? • What does “ownership” mean to you?
MANAGEMENT	• Who should be responsible for managing the electronic databases, freezers, etc.? • Who should pay for this?
SETTING POLICY	• Who should decide what the rules are about how data can be accessed, how it may be used (e.g. for what purposes)?
CONTROLLING ACCESS	• Who should review incoming requests for information and biorepository access to make sure the research is beneficial to participants and their communities and that the researchers are trustworthy?
WHO CAN ACCESS DATA AND BIOSPECIMENS	• What are the criteria for researchers: academic researchers, government researchers, drug company, insurance companies, Tribal Health organization, anyone?
ALLOWABLE RESEARCH QUESTIONS	• Are there any kinds of research questions that should NOT be allowed? • If so, what are examples?
COMMUNITY CONSENT	• Must there be community consent and Tribal approval for individual community members to participate? • What should community consent look like? • What about Tribal members who live in urban areas and/or off Reservation lands?
INDIVIDUAL INFORMED CONSENT	• Is broad consent – permission for all future research uses – OK? • If not, what should be done instead?