FAQ: Participation of Indigenous and Traditional Communities

  1. How will the Genographic Project benefit indigenous and traditional peoples?

  2. How is the Genographic Project ensuring an ethical approach to collaborating with indigenous and traditional communities and individuals?

  3. How do you protect indigenous and traditional participants’ data and ensure security, privacy, and confidentiality?

  4. What is the protocol used for explaining the project to indigenous and traditional peoples?

  5. Are there any differences in field research between regions or among groups within any particular region?

  6. In which regions have indigenous and traditional peoples participated so far?

  7. How is consent documented, especially for nonliterate peoples?

  8. How does the Genographic Project determine who is able to give consent for a community or people?

  9. What is the process of gaining consent from individuals in each region?

  10. What happens if an indigenous or traditional community or individual declines to participate in the Genographic Project?

  11. How will the project conduct analysis on ancestor remains?

Answers

  1. How will the Genographic Project benefit indigenous and traditional peoples?

    In addition to answering questions of scientific and human interest to indigenous and traditional populations and individuals who decide to voluntarily participate in the research, we have also established a tangible benefit of giving back to participating and non-participating populations in the form of the Genographic Legacy Fund (GLF).  The GLF aims to support indigenous and traditional peoples’ aspirations to promote and revitalize their cultures. The GLF is directed primarily toward education initiatives, cultural conservation, and linguistic preservation and revitalization efforts. It is our hope that the GLF, funded by a portion of the net proceeds from the sale of the Geno 2.0 Kits, is establishing a positive and ongoing legacy for the Genographic Project that will support indigenous and traditional peoples—those participating in the project, as well as others.

  2. How is the Genographic Project ensuring an ethical approach to collaborating with indigenous and traditional communities and individuals?

    The Genographic Project draws on modern research ethics as well as indigenous and traditional experience and thinking to establish a core ethical benchmark under which to carry out outreach and consultation, as well as participation among indigenous and traditional communities. The Genographic Ethical Framework Document (PDF, Adobe Acrobat Reader Required) describes the project’s ethical framework in detail.

  3. How do you protect indigenous and traditional participants’ data and ensure security, privacy, and confidentiality?

    We have taken specific precautions to implement multiple security layers in the Genographic Project.  We will not make public the names of communities or individuals participating in the project unless they consent or specifically choose to do so. All samples from indigenous and traditional peoples have been and will continue to be coded by the regional centers or associate researchers and then recoded when the results are received. Only recoded data will be accessible in the central database. The actual informed consent forms do include the names of the participants and are maintained at the research center under lock and key. They are maintained separately from the actual coded samples in a secure location.

    This field-collection system consolidates the phenotypic data with the electronic output of sequencing the DNA samples into a single consolidated record and transmits these records via a virtual private network (VPN) to the master database.

    The consolidated data set and analytical results are located in one central location at National Geographic headquarters, the customized DNA Analysis Repository (DAR), a central database solution that manages electronic DNA data for the Genographic Project. The DAR leverages information management software to manage DNA data collected from Genographic Project investigators worldwide.

    Overall, we have taken steps to help ensure that the project’s infrastructure, policies, and procedures provide secure transmission, storage, and management of all the Genographic DNA data and records.

  4. What is the protocol used for explaining the project to indigenous and traditional peoples?

    An important aspect of the protocols developed for the Genographic Project has been the decision to engage, wherever possible, local peoples to advise on how best (from a community’s perspective) to introduce and explain (in local language and custom) the project to those being provided with the opportunity to participate. For example, in some circumstances, the process of developing relationships takes a fair amount of time as trust and understanding develop. The assistance of local people who are welcomed into communities and the practice of building trusted networks are key to meeting our basic standard of free, prior, and informed consent—for all.

  5. Are there any differences in field research between regions or among groups within any particular region?

    The project applies its ethical framework and scientific protocol principles consistently across the regions. There might be some minor differences associated with procedures or required approvals among the regions. For example, a specific country or region may require approvals from multiple ministries and government agencies responsible for monitoring all research involving indigenous and traditional peoples. The Genographic Project adheres to all local, national, and regional laws and ethical guidelines associated with research involving humans, and is always open to improving upon best practices through constant dialogue.

  6. In which regions have indigenous and traditional peoples participated so far?

    Participation and therefore sampling can only be collected in regions where approved IRB protocols are in place. Regions where approved IRB protocols are in place and sampling has begun include East Asia, India, Middle East, North America, North Eurasia, and Sub-Saharan Africa.

  7. How is consent documented, especially for nonliterate peoples?

    Following a deliberate process of outreach and consultation, consent is documented with the completion of the free and prior informed consent form. In cases where the participant is nonliterate, consent can be acknowledged with a mark or via verbal consent. In addition, a member of the research team and a third party witness are also required to sign the consent form to document consent has been given.

  8. How does the Genographic Project determine who is able to give consent for a community or people?

    The researchers work with local and regional recognized community elders and leaders as well as relevant tribal assemblies and representative bodies to gain permission to explain the project and ultimately to request and, if possible, obtain collective consent. This process can take weeks and even months of correspondence and relationship-building prior to any actual visits taking place.

  9. What is the process of gaining consent from individuals in each region?

    The Genographic Project is an ongoing initiative that is by its very nature collaborative. In all instances the word “consent” means free, prior and informed consent (FPIC). Each indigenous and/or traditional person participating in the Genographic Project will provide informed consent by understanding and signing (or verbally acknowledging in the presence of a witness) the informed consent form (or by another method approved by the local IRB) before the collection of any DNA sample and oral history/family information.

    One of the ethical foundations of the project is that indigenous and traditional peoples be consulted—i.e., conferred with—at each stage of the project. Advice from indigenous and traditional leaders and experience confirms that authority must be sought and gained at a local level. Furthermore, while we also seek advice from regional, national, or international representatives of indigenous and traditional peoples, we must ultimately defer to local indigenous and traditional representatives.

    Collaboration is present through every major phase of the project. The Genographic grantees and researchers at each of the regional centers around the world work first with collaborators and leaders in individual communities not just to explain the Genographic Project, but also to better understand how and if those communities are interested in learning about their migratory history, before any other planning takes place. Sampling of DNA takes place only when consultation—which may take weeks and months in advance of any trip—is complete and there is both collective and individual interest in participating. The collaborative relationship continues into the results phase of the analysis. The researchers work with the communities to determine if, when, and how they are interested in sharing the collective information from the analysis of the group’s genetic data.

  10. What happens if an indigenous or traditional community or individual declines to participate in the Genographic Project?

    The project has received a positive response from many different indigenous and traditional peoples around the world, as evidenced by the feedback from volunteering participants to date. It is absolutely acceptable for any individual or community to elect not to participate in the project.

  11. How will the project conduct analysis on ancestor remains?

    We will abide by all local laws and regulations. We only work on remains that have been cleared for analysis by appropriate indigenous and traditional communities with oversight of a burial ground as well as relevant government agencies and other authorities.

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