Skip to content
 pdf

Should We Participate in Genetics Research?

By Puneet Chawla Sahota, PhD

Some AI/AN communities have already taken a position on genetics research as is discussed in the case studies on how tribes are relating to genetics research. However, many communities have not yet determined where they stand on genetics research. Other communities are interested in genetics research participation, but need additional tools to engage confidently as partners in this type of research.

The questions and discussion guide below provide information and tools to communities with different views on genetics research, including those communities that have not yet solidified their position.

Within a community, individual tribal members may have different opinions about genetics research participation. There may be some issues the community can agree upon collectively, but other issues may be different for individual community members. For example, people may have different views on how they would like their biological specimens (blood, tissue, DNA, etc.) and resulting data handled in research. For example, some community members might want their specimens and data stored for use in future research studies. Other tribal members might want the specimens and data destroyed at the end of the original study. These kinds of differences in views can be accommodated through offering options to individual study participants on the informed consent form, which they sign to enroll in a study. More information about options and model language for informed consent forms is available here.

In this section below, we will focus on how a community can develop a collective stance on genetics research. We offer several questions for your consideration. Please click on the answer choice that best describes your feelings or your community’s perspective about research. You will them be provided with additional discussion and links to information specifically related to your answer.

Please note: your answers are not being recorded in any way. This website is a tool for you to consider your own views on genetics research.

Questions to Consider:

1. How do I/we feel about engaging in research in general?

 Want to participate

Research can provide useful information to AI/AN communities regarding their health, as well as other kinds of data. To maximize the benefits of research, we encourage AI/AN communities to ensure that necessary protections are in place for individual research participants and the community as a whole. Some of the issues to consider include potential risks and benefits to the community; ways to minimize risks and maximize benefits; the use of data and who will have access to it; ways for the community's to provide input throughout a study; and community involvement in development of publications and dissemination of research findings.

The National Congress of American Indians Policy Research Center has developed a research regulation toolkit for AI/AN communities. The toolkit includes a paper on different ways that AI/AN communities can regulate research, including tribal Institutional Review Boards and other kinds of research review committees. There is also a checklist for tribal leaders to use in evaluating potential research partnerships. Finally, the use of data and biological specimens should be considered, including how data will be stored, who has access to it, and what will happen to the data at the end of a study. More information on options for tribal control of data are available here.

AI/AN communities are encouraged to formalize their research partnerships through written agreements. These kinds of agreements are useful tools in setting out the terms for a research project, including the rights and responsibilities of the community and research institution, as well as specific provisions related to the use of data. More information about research agreements, including model agreements, is available here.

 Do not want to participate

There has been a long and challenging history of research conducted with tribal communities. Some of the risks related to participating in research include potential misuse of data and possible stigmatization of the tribe if research findings are presented in a negative light and without community involvement. If a tribe is particularly concerned about a specific research project, the tribal government might consider passing a resolution against that study. However, some research studies might also be useful tools to help communities collect their own data on issues that concern them. For more information about how to maximize potential benefits and minimize potential harms of research studies, please see the research regulation toolkit developed by the NCAI PRC. This toolkit includes information about how to create a tribal process for regulating research and options for tribal control of data.

 Want more information

Research is a complex and difficult topic for any community to consider. There has been a challenging history of research conducted with tribal communities, with some past instances of harmful studies. However, research can also be a source of information to help AI/AN communities with their own policies and programs. Many AI/AN communities feel that they need good data to help them decide where to prioritize resources and how to tailor services and programs for their members.

We have developed a set of questions to help AI/AN communities decide which values will guide them in research. There is also a research curriculum for tribal leaders that discusses tribal values and research. This curriculum is delivered as an in-person training and was developed by the National Congress of American Indians Policy Research Center. Module 1 of the curriculum

AI/AN communities should be careful to ensure that protections, such as a research agreement, are in place before engaging in research partnerships. Some of the issues to consider include potential risks to the community; ways to minimize those risks; the use of data and who will have access to it; ways for the community to provide input throughout a study; community involvement in development of publications and dissemination of research findings.

The National Congress of American Indians has developed a research regulation toolkit for AI/AN communities. The toolkit includes papers about how tribes can regulate research conducted on their lands and best protect their citizens who participate in studies. One paper that might be useful to you or your community is about which issues to consider when deciding whether or not to participate in a research study. A summary checklist has also been developed for tribal leaders to use in evaluating a potential research project.

For tribes that choose to engage in research partnerships, we encourage the use of written agreements. These kinds of agreements are useful tools in setting out the terms for a research project, including the rights and responsibilities of the community and research institution, as well as specific provisions related to the use of data. More information about research agreements, including template contracts, is available here. Please note that these templates are just example agreements, and that each tribe should consult its own legal counsel before using these template contracts.

2. How do I/we feel about participating in genetics research?

 Want to participate

For tribes that choose to participate in genetics research studies, there are a number of tools available to help ensure a strong and productive partnership. Specific items tribes may wish to consider are:

  1. Is the research institution likely to be a good partner?
  2. Is the nature of the research and its purpose clear to the tribe?
  3. What are the specific benefits of the study for the tribe?
  4. What are the potential risks of the study for the tribe? How will those risks be minimized?
  5. Will genetic information collected in the study be handled in a secure manner?
  6. Who will have access to the data? Will the genetic data be shared with anyone?
  7. How will the tribe maintain control over how the data are used? ? Is there a need to control the data? Are there any secondary uses of data planned? Who "owns" the data and resulting products? Will results of the research study be returned to the tribe?
  8. Is a written agreement in place to protect the tribe's interests in the study?
  9. Is there an appropriate process for obtaining informed consent from individual tribal members that might participate in the study, and from the tribe as a whole?
  10. Does the informed consent form include language about how biological specimens and genetic data will be used? Do tribal participants have the option of choosing what they wish to have happen with their biological specimens and genetic data?
  11. What kinds of incentives will be provided to individuals participating in the research study? Are these incentives or payment amounts ethical and appropriate for this community's context?

For more information related to these questions, the following resources are available:

Questions for reflection in choosing a partner for genetics research.

Educational materials about the basics of genetics research for tribal communities

Model language for protecting tribal needs in informed consent forms and scientific protocols for genetics research studies

Model research contract language

Options for tribal control of data

Data sharing policy information

Tribal policies for regulation of research and tribal research review board structures

 Do not want to participate

There are a wide variety of views on genetics research across Indian Country. Some tribes have chosen not to engage in any genetics research studies at all, while other tribes have participated in such research. Case studies of the decisions tribes have made about genetics research are available. More information about the basics of genetics research is also available. Tools are also available to help tribes protect their citizens from harm in research studies. These tools include template research contracts, model language for informed consent forms and scientific research protocols , and options for tribal control of data .

 Want more information to help guide our decisions about genetics research

Genetics research is a complex topic that can be difficult to understand. Case studies and information sheets about the basics of genetics were written especially for tribal communities, and are available here. There are a wide variety of views on genetics research across Indian Country. Some tribes have chosen not to engage in any genetics research studies at all, while other tribes have participated in such research. Case studies of the stances tribes have taken towards genetics research are available. As is shown by these cases studies, there are some potential health benefits of genetics research for tribes while there are also potential risks, such as misuse of genetic data. Not engaging with genetics research also has potential risks, such as possibly missing out on long-term health benefits from research.

In thinking about genetics research, it may be helpful for a community to first decide what its overall stance on research will be – this includes all kinds of research topics, not just genetics. A guide to determining the values that might guide research in your community is available.

Here are some questions tribal leaders and citizens could discuss internally to decide how they feel about genetics research specifically:

  1. Do we have all the information we need to assess a proposed genetics research project? More information on the basics of genetics research is available in this resource guide.
  2. Does genetics research fit with our larger community values? For more information about determining the values that will guide research in your community, please click here.
  3. What do we hope to gain from genetics research? What are the specific possible benefits to our community from this type of research? For more information about potential benefits of genetics research, please see the section Personalized Prescriptions
  4. What are our concerns or fears about genetics research? For more information on how other tribes have related to genetics research, please see Cases of How Tribes are Relating to Genetics Research
  5. What do our elders think about research in general and genetics research specifically? Do they have guidance about spiritual or cultural concerns we should consider in research studies? What topics do elders feel are most important for us to research? What health problems do elders feel are most important for us to research?
  6. What do our youth think about research in general and genetics research specifically? Do they have ideas about how research can help address the future needs of the tribe?
  7. What are our views on the handling of blood and biological specimens? Are there spiritual beliefs or values we hold about human bodies or blood that need to be considered?

Spiritual and cultural views about blood and biological specimens can be incorporated into a genetics research study. There are many ways to ensure that specimens are treated in a manner respectful of the tribe's views or beliefs. For example, tribes could request that specimens be returned to them once the genetic data have been collected and entered into a computer. Specimens could then be disposed of in a ceremonial manner if that is what the tribe wishes to do. Tribes could also request that laboratory facilities be blessed by a tribal spiritual leader before any specimens are brought there, or scientists could be trained in specific protocols for handling specimens in a culturally-appropriate manner.

Individual tribal members also may have different spiritual beliefs, and therefore, different views on how they would like their own biological specimens handled. This diversity in views can be addressed through having options on the informed consent form. For example, research participants could be asked what they would like done with their specimen once the study is over and given options for the specimen to be destroyed, returned to the individual or tribe, or stored for use in future studies. These options should also be asked regarding the data derived from specimens, because genetic information can be stored electronically separate from a biological specimen. More information about informed consent form options and model language is available here.

Tribes can also set the terms for how specimens and data will be used through a written agreement that is signed with the research partner. More information about model research agreements is available here. Sample policy language for scientific protocols regarding the protection of specimens taken from tribal members is also available here.

Finally, there are many mechanisms available for overall tribal control of data. More information about tribal data control options is available here.

3. What do we hope to gain from genetics research?

 A cure for disease or health issue facing our community

Genetics research is a long term process, and it may take years or decades before implications for disease treatment are realized. Treatments for disease are a potential benefit of genetics research studies, but they are not guaranteed. Genetics research helps scientists to understand some factors that may contribute to human diseases. However, most chronic health problems affecting AI/AN communities, such as diabetes, cancer, heart disease, and substance abuse are complicated. These diseases are related to both genetic and environmental factors. For more information about the interaction between genetics and environment in causing disease, please click here.

There are also many different kinds of genetics research, and not all of them are specifically related to health. For more information about different types of genetics research, please see the NCAI PRC primer. Even in health, there are different types of genetics studies. For more information about types of health genetics studies, please click here.

One type of genetics research that is promising is called pharmacogenomics. This kind of research looks at how treatments, such as medications, can be tailored to an individual based on his or her genetic makeup. The idea is to figure out which medicines might be most effective for a person depending on his or her genes. For more information about pharmacogenomics and AI/AN communities, please click here.

 Targeted prevention of disease

Genetics research is a long term process, and it may take years or decades before implications for disease prevention are realized. This is a potential benefit of genetics research studies, but it is not guaranteed. Genetics research helps scientists to understand some factors that may contribute to human diseases. However, most chronic diseases affecting AI/AN communities, such as diabetes, cancer, heart disease, and problems with substance abuse are complicated. These diseases are related to both genetic and environmental factors. For more information about the interaction between genetics and environment in causing disease, please see this short paper about genetics and health here.

There are many steps Native communities can take now to help prevent diseases. For example, tribal fitness programs or walking groups can help to encourage exercise, which can help prevent obesity and diabetes. Programs like tribal gardens can also help encourage the use of traditional foods and a healthy diet. More information about genetics and prevention of diseases such as diabetes and cancer is available here.

Spiritual ceremonies can help community members to have a sense of healing and wholeness. Spiritual components can also be included in programs for preventing substance use, alcohol use, and suicide. For more information about suicide prevention resources, please click here. For more information about prevention of alcohol use and substance abuse, please click here.

It is important to know that there are many different kinds of genetics research, and not all of them are specifically related to health. For more information about types of genetics research in general, please see the NCAI PRC primer. For more information about health-related genetics research specifically, please click here. One type of health-related genetics research that is promising is called pharmacogenomics. This kind of research looks at how treatments can be tailored to an individual based on his or her genetic makeup. The idea is to figure out which medicines might be most effective for a person or group of people depending on their genes. For more information about pharmacogenomics and AI/AN communities, please click here.

 Training opportunities for community members in science and research

Research studies can provide the opportunity for community members themselves to gain skills in how to do research. They can also learn more about science and careers in science. Tribes are encouraged to discuss potential training opportunities with their research partners. There are many ways community members can be involved in conducting research and also many ways they can receive training in research. For example, community members can be invited to serve as research interns or assistants. College students can be offered credit for working with the research team. Research partners can mentor youth or students interested in learning more about science. Grants written to fund research projects could include budget line items for hiring community members to work on the research study and be trained in research skills. Research partners can also offer educational sessions at health fairs, in local schools, and at community meetings regarding genetics, health, and research methods. For more information about how researchers can engage effectively with AI/AN communities, please see the section with resources for researchers.

There are also organizations and government programs devoted to training AI/AN community members to be scientists, researchers, engineers, and health professionals. More information and resources are available on these websites:

Association of American Indian Physicians

Society for the Advancement of Chicanos and Native Americans in Science

American Indian Science and Engineering Society

National Congress of American Indians Policy Research Center

National Institutes of Health Minority Access to Research Careers Program

National Institutes of Health Bridges Program

RISE Program

 Other

There may be other benefits and risks of specific genetics research studies that have not been mentioned above. Each research study is different, and each partnership between a tribe and a research institution is also unique. Tribes may find that there are different sets of benefits and risks in different research studies. More information about potential benefits and risks of genetics research for tribes is available in a primer from the NCAI PRC and the section Cases of How Tribes are Relating to Genetics Research

4. What are our concerns about genetics research participation?

 Misuse of biological specimens (e.g., blood, skin cells) or genetic data

This is a common concern of tribal communities regarding genetics research and research in general. Misuse of data has been a problem in some past research studies, as is discussed in the section on case studies of genetics research in tribal communities. However, there are many strategies tribes can use to ensure that specimens and data are only used in ways authorized by the tribe. Tribes might first wish to consider which research partners they consider most trustworthy in handling specimens and genetic data. Tribes can also require that their research partners sign written contracts which specify how data can be used, who has access to data, and what will happen to the data after the study is over. More information about template research contracts is available here. Please note that these template contracts are provided as samples, but that tribes should consult with their own legal counsel before using these templates. Sample policy language for protecting tribal interests in genetics research has also been developed. There are also different options for tribal control of data and data sharing in genetics research, as is discussed here. Tribes might even consider setting up their own system for storing specimens and/or data on tribal lands. For example, the Northwest Portland Area Indian Health Board has created its own data repository. More information about creating a tribal data repository is available here.

There may also be cultural or spiritual concerns for some tribal members regarding the handling of blood or biological specimens. Spiritual and cultural views about blood and biological specimens can be incorporated into a genetics research study. There are many ways to ensure that specimens are treated in a respectful manner. For example, tribes could request that specimens be returned to them once the genetic data have been collected and entered into a computer. Specimens could then be disposed of in a ceremonial manner if that is what the tribe wishes to do. Tribes could also request that laboratory facilities be blessed by a tribal spiritual leader before any specimens are brought there, or that scientists working in partnership with tribes receive training about how to handle specimens in culturally appropriate ways.

Individual tribal members also may have different spiritual beliefs, and therefore, different views on how they would like their own biological specimens handled. This diversity in views can be addressed through having options on the informed consent form. For example, research participants could be asked what they would like done with their specimen once the study is over and given options for the specimen to be destroyed, returned to the individual or tribe, or stored for use in future studies. These options should also be asked regarding the data derived from specimens, because genetic information can be stored electronically separate from a biological specimen. More information about informed consent form options and model language is available here.

 Stigma or embarrassment for the tribe

This is a common concern of tribal leaders related to genetics research. Many tribes are aware of the lawsuit filed by the Havasupai Tribe regarding the use of tribal members' genetic samples and resulting data in ways that were not authorized by the tribe. More information about the case is available here. While stigmatization is a potential risk of research studies on sensitive topics, there are a number of strategies tribal leaders can use to minimize this risk and protect the community. For example, tribes can decide whether or not they wish to be named at all in research studies. There may be some studies for which a tribe wishes to be publicly recognized for contributing to the research. On the other hand, tribes might choose not be named in research studies that deal with sensitive issues. However, some scientists feel that if tribal identity is not linked to biological specimens that they lose some scientific value. Tribes can also choose which topics for research studies they feel are most helpful to the community and least likely to be stigmatizing. Finally, tribal leaders can also participate in the process of interpreting research findings and reviewing publications to ensure that the community's perspective is represented.

 Ownership, patenting or intellectual property of biological specimens (e.g., blood, skin cells) and genetic data

The question of who "owns" data is often raised by tribal leaders regarding research studies. The issue of ownership is linked to broader questions about how data will be used, if the tribe's interests in the data will be protected, and if data will be kept confidential. Current intellectual property law and legal precedent do not give tribes intellectual property rights or ownership over research data. However, tribes can set the terms of any written contract signed with their research partners, and this may include negotiating shared ownership or tribal ownership of data. Intellectual property issues related to products that could result from genetics research, such as patents, are another issue tribes may wish to consider and discuss with potential research partners. More information on intellectual property and model research contracts is available here. Regardless of who owns data or specimens, terms can be specified in a contract about how data/specimens will be used, where they will be stored, who will have access to them, and whether or not they will be shared with other research groups. Tribes can use written contracts as a tool to negotiate their preferred terms, which may be different depending on the specific research partnership. More information about options for tribal control of data and data sharing is available here.

 Concern about whether genetics research fits with traditional Native ways of knowing and living

Some tribal members may wonder whether genetics research is consistent with Native worldviews or traditional cultural and spiritual beliefs. Tribes across Indian Country have had a wide variety of reactions to genetics research, from not participating at all to engaging in research partnerships. Case studies illustrating these diverse stances are available here. Some tribes have been particularly concerned about genetics research on ancient human migration patterns and the potential political and legal implications of this research, as is discussed in the case studies paper. Tribal members may wish to consult their elders or spiritual leaders to hear their views about research. A set of questions and discussion about how to determine which values will guide your community in research is available here.

There may also be cultural or spiritual concerns for some tribal members regarding the handling of blood or biological specimens. Spiritual and cultural views about blood and biological specimens can be incorporated into a genetics research study. There are many ways to ensure that specimens are treated in a manner respectful of the tribe's beliefs. For example, tribes could request that specimens be returned to them once the genetic data have been collected and entered into a computer. Specimens could then be disposed of in a ceremonial manner if that is what the tribe wishes to do. Tribes could also request that laboratory facilities be blessed by a tribal spiritual leader before any specimens are brought there or that scientists working in partnership with tribes receive training about how to handle specimens in culturally appropriate ways.

 Other

In addition to the issues mentioned above, there may be other concerns that tribal communities have about genetics research. The risks and benefits will vary for each research study. Tribal leaders and community members are encouraged to consider the potential risks and benefits separately for each potential research partnership.

How Do We Decide?

A Guide for American Indian/Alaska Native Communities

The interactive decision guides provide a set of interactive questions to help you reflect on your feelings regarding research. Read More