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Sharing Data and Protecting Your Community

By Puneet Chawla Sahota, PhD

Pow Wow  CircleThe use of data is a critical issue for American Indian/Alaska Native (AI/AN) communities to consider when making decisions about engaging with research, and genetics research studies in particular.  Genetic data can be used in many different ways, including for health studies and migration studies, as discussed in the case studies and NCAI’s primer on genetics research. A detailed discussion of data sharing in research conducted with AI/AN communities, including ethical considerations, data sharing options, and a template data sharing agreement, has been developed by Dr. Victoria Warren-Mears at the Northwest Portland Area Indian Health Board.

Sharing data has the potential to benefit AI/AN communities because data can then be used for additional studies that could yield information regarding health and disease. However, data should be shared carefully in order to minimize the risk of misuse. The sections below include information and resources for AI/AN communities regarding data sharing policies, including model data sharing contracts and a data sharing plan for an NIH grant which also protects tribal decisions about restricting data access.

Data Sharing and Tribal Control

For researchers, sharing data is often a scientific norm. One of the main reasons researchers share data is to validate one another’s findings as well as to maximize the potential learning from a data set. Researchers try to efficiently gather information by analyzing existing data sets rather than re-collecting data for each new research question. In addition, large genetic datasets contain a large volume of information that may be more than one research team can fully analyze. However, the sharing of data may also result in research studies being done that were not originally authorized by an AI/AN community. In the past, concern about misuse of data has caused some AI/AN communities not to share data, and tribes may restrict access to data for other reasons as well. AI/AN communities should carefully consider what level of control they will have over biological specimens and data in a proposed research study. Control of biological specimens and data includes how they are used; how, where, and for how long they will be stored; who will have access to them; and how and when they will be destroyed, if at all. In reviewing research proposal documents, including the research protocol and informed consent forms, AI/AN communities should carefully consider language related to each of these issues. The terms of use for data and biological specimens should be as specific as possible. For useful sample policy language on the use of biological specimens, see Sample Genetic Policy Language for Research Conducted With Native Communities. Data and biological specimens should be stored securely, under lock and key. AI/AN communities could consider having data and/or biological specimens stored in their own facilities, although special technology may be required for the storage of biological specimens.

Tribally-Controlled Data Storage

Some AI/AN communities are choosing to set up their own repositories, either for biological specimens or data. For example, the Alaska Native Tribal Health Consortium manages the Alaska Area Specimen Bank, which includes biological specimens donated by nearly 92,000 people, most of whom are Alaska Native.  The Northwest Portland Area Indian Health Board (NPAIHB) recently passed a resolution to establish their own data repository

Navigating Funder Requirements for Data Sharing

AI/AN communities should also carefully examine the data sharing requirements or expectations of potential funding agencies for the research project (see Budget and Funding Sources, above). In some cases, funding agencies may expect that data is made publicly available or shared with other researchers. For example, researchers who are awarded NIH grants of $500,000 or more in a single year are expected to share data when possible. Scientists who receive any amount of NIH funding for genomic research are expected to share data. The NIH does, however, accept data storage options that are highly controlled. For example, in the NIH’s Data Sharing Workbook, data enclaves are described as one option. In the case where there is a risk of individual research participants’ identities not being kept confidential, data may be stored in a restricted-use dataset, or data enclave. Researchers outside the original team would then submit requests for specific analyses to be conducted, and the original research team would provide the aggregate results of analysis. In this manner, only the original research team would have direct access to the data. If a community wishes to pursue the data enclave option, then the researcher could describe that strategy in the grant application for NIH. For example, the Healing of the Canoe project at the University of Washington received funding from the NIH and proposed a data sharing plan with restrictions on access to the data. 

AI/AN communities might consider negotiating with potential funders and researchers about data control if they are concerned that data sharing might cause the release of sensitive information or stigmatization of the community. If it is not possible to negotiate adequate community control of data or a funding institution unequivocally requires that the data be made publicly available, then AI/AN communities must carefully weigh the benefits of the research against the risks of data sharing. There may be research proposals that a community chooses to accept even if there is a data sharing requirement because of the potential benefits of the study. In working with researchers, AI/AN communities are encouraged to become involved early in discussions about how biological specimens and data are used. Tribes can enforce their decisions about how data will be used through tribal resolutions and written contracts with research partners. There are a number of template contracts that have been developed for data sharing in research projects while still maintaining any desired tribal control of data. These template contracts provide sample language, but should be reviewed by tribal legal counsel prior to use. Exemplary contracts have been developed by the following organizations:

Northwest Portland Area Indian Health Board

American Indian Law Center, Inc.

Indigenous Peoples’ Council on Biocolonialism

Canadian Aboriginal AIDS Network

Indigenous Wellness Research Institute (IWRI) at the University of Washington

If data are used in unauthorized ways, tribes can also report this misconduct to funding agencies and the researcher’s institution or professional organization.

In conclusion, data sharing is an important and complex topic for AI/AN communities and researchers to consider related to research partnerships. A summary of the issues and options related to data sharing in studies with AI/AN communities is available in the summary toolkit.

Photo Credit: iStockphoto #16784194

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