By Hannah Nelson

– Clinical researchers who collect and analyze health data from Native communities have a unique responsibility to protect this information in ways that align with the data privacy preferences of specific communities, according to a study published in JAMIA.

Researchers ran a workshop with 14 tribal leaders to co-design a research study to assess preferences concerning health data privacy for biomedical research. All interviewees had connections to the Strong Heart Study, the country’s most extensive epidemiologic study of Native American health.

Workshop participants provided recommendations regarding who researchers should consult and what methods to use, underscoring the importance of relationship-building between clinical researchers and tribal communities.

During the workshop introductions, participants shared details about their ties to the SHS, either as current or former employees, study participants, or sometimes both participant and employee.

Workshop participants shared thoughts on the opportunities and the challenges of such a long-running and ever-expanding federally funded research study. They then shared ways in which current and future SHS investigators could engage with tribal communities to focus on specific research questions.

Participants noted that the continuation of the SHS was crucial to the health of their respective communities.

The first question posed by the facilitator was related to who the investigators should consult for the research.

“It quickly became apparent that participants expected and recommended that a wide swath of individuals be consulted,” the study authors noted. “Participants named specific individuals (eg, two individuals who are attorneys) as well as groups of people.”

For the second question (what should we ask participants), attendees suggested that researchers start by asking people how important health data privacy is to them.

The group voiced wonderings about policies governing existing data versus data that researchers had yet to collect. They warned that there might be instances in which tribes have hard limits on data sharing and that easily accessible written documents may not articulate those limits.

The final question that the workshop leaders posed to participants involved logistics about when, where, and how to engage members of American Indian communities best. Participants gave several suggestions rooted in their cultural practices.

“These suggestions emphasize the importance of relationship-building through both formal (eg, structured meetings and presentations) and informal (eg, cultural events and local communal spaces) activities and practices that foster inclusivity and accessibility of information,” the study authors wrote.

Participants also encouraged investigators to comply with Indian Health Services (IHS) regulations and other legislation that impacts tribal-researcher relations.

One participant who self-identified as a retired medical professional and veteran said that all researchers working with tribal communities need to recognize tribal sovereignty and should understand the position of tribal governments within the larger structure of the American government before initiating any research.

Participants cited examples of noncompliance, which led to lawsuits against federal agencies in which the tribes were victorious.

Lastly, the group provided several “cultural tips” for investigators. The study authors pointed out that these tips are specific to the participating SHS communities and may not generalize to other groups or Native communities.

“The communal nature of some American Indian tribal cultures stands in contrast to individualistic Western conceptualizations of privacy, and by extension, research about privacy,” the researchers wrote. “Western definitions of privacy are synonymous with self-governance and individualism, and existing regulations are designed to protect against individual-level risks.”

However, the focus on individual autonomy is incongruent with “Indigenous communitarian ethics,” the study authors said. Research has suggested that privacy and consent policies often fall short in protecting tribal communities as group entities.

Native and Indigenous researchers have emphasized the importance of protection in tribal communities, pointing out the high stakes of research outcomes that may affect the entire tribe, such as genomic research that is or can be used to disenroll tribal members.

“Our findings suggest that individual tribal members desire to have highly inclusive collective discussions when making decisions about their health data privacy, pointing to the need for additional studies about Native perspectives on the use of health data for research,” the study authors said.

“Our findings also suggest that research with some tribal communities may also benefit from taking into account a relational worldview, group identity, and collective privacy protection prior to initiation,” the researchers concluded.

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