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American Indian and Alaska Native Genetics Resource Center American Indian and Alaska Native Genetics Research Resource Guide: Tools for Tribal Leaders and Citizens (PDF of all content in guide) This resource guide was developed by the National Congress of American Indians Policy Research Center with support from the National Human Genome Research Institute (NHGRI), which provided funding for the project. The content does not represent the official position of the National Human Genome Research Institute, National Institutes of Health or the Department of Health and Human Services. In this resource guide, the NCAI Policy Research Center does not take a stance in favor of or against American Indian and Alaska Native peoples or communities participating in genetics research. As sovereign entities, tribal governments must make those decisions for themselves. The goal of this guide is to provide tribal leaders and AI/AN peoples with the tools and information they need to make their own informed decisions about genetics research. The authors of the resource guide sections include Native authors with expertise in genetics research related to Native communities. No information will be captured or stored from this website. All responses to the interactive question sections are strictly for the information of the person entering their answers. No answers will be collected or captured by the website. ©National Congress of American Indians 2012 Page 1 Introduction Genetics research is a fast-growing and complicated area. American Indian/Alaska Native (AI/AN) tribal leaders and citizens have raised many questions and concerns about genetics research. They have also expressed an interest in learning more about the science behind genetics and how other tribal communities are making decisions related to genetics research. This resource guide serves to answer these questions, to highlight cases that describe how some tribes are thinking about genetics research, and to provide information and tools for tribes and citizens as they consider their own stances on genetics research. Each person, family, and community is unique and therefore will have a different set of considerations regarding research. Genetics research includes a spectrum of study types, including how genes influence human health, genetic variation between individuals and groups of people, and research on ancient human migration patterns. “Genes” are units of information passed down from parents to child. They are molecules made up of DNA (deoxyribonucleic acid). “Genomics” is a type of research that examines the “genome” of an individual. The “genome” is all of a person’s DNA, or their genetic blueprint. More detailed information about the basics of genetics and genomics research is available in the Basics of Genetics section of the guide. The main sections of this resource guide are: Frequently Asked Questions: Quick overview of the resource guide, including key considerations in decision making around genetics research; research agreements; and the process of informed consent. Summary Tools: Brief handouts and checklists for tribal leaders, including questions to consider in making decisions related to genetics research, options for control of data, increasing the number of Native scientists, and the use of genetic testing for tribal enrollment. The Basics of Genetics: Stories and handouts for AI/AN communities about the basics of genetics, genetics research, and the relationship between genetics and health. Making Decisions about Genetics Research: A guide to identifying community values to help you make decisions about research in your community, including an interactive set of reflection questions about genetics research. Cases of How Tribes are Relating to Genetics Research: A set of interactive case studies about how tribes across the US have chosen to deal with genetics research, including both tribes that are participating in genetics studies and those that are not. Regulating Genetics Research in Your Community: Templates and models for research contracts, informed consent forms, and tribal control of research data. Enhancing Genomic Research through a Native Lens: A Native scholar’s perspective on the field of genomics research, and a discussion of the need to increase the number of AI/AN scientists. ©National Congress of American Indians 2012 Page 2 Tribal Enrollment and Genetic Testing: Information about the use of DNA testing in determining tribal citizenship or enrollment. People to Contact with Questions: A list of the contributors to this resource guide and other individuals to contact who may be able to assist with questions about genetics research. For Researchers: Information for researchers about how to partner effectively with tribes in genetics research studies. About Us: Background and contact information for the National Congress of American Indians Policy Research Center. ©National Congress of American Indians 2012 Page 3 Frequently Asked Questions Why did the National Congress of American Indians (NCAI) Policy Research Center develop this resource guide? Genetics research has become a prominent topic of discussion among American Indian/Alaska Native (AI/AN) communities. Tribal leaders have raised important questions about this type of research and expressed the need for more resources about genetics research that are specific to AI/AN communities. In June 2010, a session about genetics research was held at the Tribal Leader/Scholar Forum as part of NCAI’s Mid Year Conference. The goal of the session was to begin a dialogue among tribal leaders about genetics research. The idea for the session grew out of a collaboration between the NCAI Policy Research Center and the National Human Genome Research Institute (NHGRI), which is part of the National Institutes of Health (NIH). During the session, tribal leaders expressed a desire for more information about genetics research. Session participants commented that they did not yet feel comfortable making decisions about this type of research yet because they needed more details and resources about genetics research. For this reason, the NCAI Policy Research Center and NHGRI decided to initiate the development of a genetics research resource guide for tribal leaders. Over two years, the NCAI Policy Research Center worked to develop the content of this web-based resource guide, with funding and support from the NHGRI. The resources included in this guide were developed by a team of authors with expertise in genetics research, particularly specific considerations for AI/AN peoples. Draft versions of the resource guide were thoroughly reviewed by a panel of AI/AN reviewers and scientists at the NHGRI. How was the content of the guide developed? How were the authors selected? The questions that tribal leaders asked at the Mid Year session in 2010 served as a basis for content development. These questions included, “What is a gene? What is DNA? How is genetic research being conducted? How are genetic data being stored? What control do tribes have over genetic data?” Before developing any content for the resource guide, the project team administered a survey to NCAI Policy Research Center Advisory Council members and NHGRI scientists. The project team also met with the NCAI Executive Board, the NCAI Policy Research Center Advisory Council, and NHGRI scientists to seek their guidance about the project. Based on their feedback, the plans for resource guide content were further refined. The project team then sought out Native scholars and other researchers with particular expertise in genetics research, data sharing, ethical issues, and specific considerations for AI/AN communities. These experts in the field were asked to contribute writings to the resource guide. Specific sections of the guide were developed in response to the questions raised by tribal leaders. The draft resource guide was reviewed by a panel of AI/AN reviewers and NHGRI reviewers, and revised in response to their comments. What is the goal of the guide? The goal of this guide is to provide tribal leaders and AI/AN peoples with the tools and information they need to make their own informed decisions about genetics research. In this resource guide, the NCAI Policy Research Center does not take a stance in favor of or against genetics research. Tribal governments and citizens must make those decisions for ©National Congress of American Indians 2012 Page 4 themselves. As sovereign nations, tribes have taken diverse positions on genetics research in the past, and some tribes have not yet determined their views or policies on genetics research. The tools are provided to assist tribal nations and citizens in their decision making around genetic research, as well as to ensure protection for research participants and communities who do choose to engage in genetics research. What are genes? “Genes” are units of information passed down from parents to child. They are molecules made up of DNA (deoxyribonucleic acid). More information about the definitions of a gene, genetics research, heredity, and other scientific concepts in genetics research is available in the resource guide. What is genetics research? Genetics research includes a variety of research topics. These include the study of how genes might influence the health of a person, how genes can vary between individuals and groups of people, and the use of genetic information to study how human groups migrated in the past. More information on types of genetics research related to health is available in the resource guide. Who conducts genetics research?
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