Regulating Genetics Research in Your Community
Many tribes are concerned about how to best protect their tribal citizens who participate in research studies. There are many tools and strategies tribes can use to ensure that they protect themselves in research studies.
This section includes resources on:
Sharing Data and Protecting Your Community: This section discusses issues of data sharing and tribal control over data, as well as ways that tribes can navigate research funders’ requirements for data sharing.
Data Control Options for American Indian/Alaska Native Communities: This information sheet provides a quick overview of data sharing and options for tribes to maintain control over data.
Using Informed Consent to Protect Tribal Citizens in Genetics Research: This section presents an overview of the informed consent process and template consent form language related to the use of biological specimens and genetic data.
Principles and Models for Data Sharing Agreements with American Indian/Alaska Native Communities: This paper aims to help researchers understand some of the key issues related to data sharing with tribes. Suggested principles and possible approaches for data sharing with tribes are provided, along with template language for a research contract.