Native American scholars study genetics issues at UI

URBANA — More than a dozen Native American scholars from across North America were on the University of Illinois campus this week to learn about the science behind extracting and analyzing DNA of indigenous people, as well as the ethical and legal issues involved.

This is the second time the UI Institute for Genomic Biology has hosted SING, the Summer Internship for Native Americans in Genomics. The inaugural workshop was held in 2011 with the intent of bringing together a diverse group of young researchers and provide them with time in the lab and in roundtable discussions.

"The best way to establish trust between a scientist and a community is if that scientist is actually from that community," said UI anthropology Professor and workshop director Ripan Malhi. Malhi, whose research involves extracting DNA from living and ancient remains, said it was not uncommon for him to meet resistance when visiting tribal communities because some past researchers would come to a village, collect samples, and never return or further engage with the community.

One of the workshop's long-term goals, he said, is to train the next leaders in the field of genomics "and allow Native American scientists to be prominent in the community to either work with collaborators who are either non-indigenous or to lead research themselves that will diversify science and the way science is done."

Other, shorter-term goals are to facilitate discussions of how genomics research is conducted and create a support network for Native American scientists and students.

In recent years there has been a lot of interest and money related to genetic research and "Native Americans have to be at the table," for these critical discussions, said Kim TallBear, an assistant professor of science, technology and environmental Policy at the University of California-Berkeley.

"We need scientists who understand the technical aspects as well as the politics at issue here," TallBear said.

Alyssa Bader from Snohomish, Wash., a graduate student in bioarchaeology at Southern Illinois University at Carbondale, is studying a collection of skeletal remains on the northern coast of Peru this summer but flew back to Illinois just for the event. She will return to Peru after the workshop's conclusion.

"Being here is awesome," she said. "It's amazing to have so many researchers here in one place and in an approachable environment." Compared with a conference where there may be hundreds of attendees, the intimate nature of the weeklong workshop has allowed her to have meaningful conversations with students and instructors, Bader said.

Part of the program also involves connecting the students with mentors, enhancing leadership skills and public speaking skills, Malhi said.

"There are multiple worlds represented here from very different backgrounds," he said, and "figuring out how to communicate with each other is important."

The group of 13 includes community college students, undergraduate students and graduate students from across North America with backgrounds in anthropology, biology, political science, music and more. They represent the Oneida, Cree, Tsimshian, Native Hawaiian communities and more.

The workshop is funded by the National Human Genome Research Institute at the National Institutes of Health. Travel, lodging and food for the attendees is covered.

During the week students met with law experts to learn about genomic legal cases, they discussed the ethical and social issues that can come up in the field and spent time role-playing, in which different participants took on the roles of non-indigenous researchers, indigenous researchers, tribal council members, research board regulators and other interest groups.

The workshop also includes a trip to the Field Museum in Chicago where participants will tour the DNA lab and meet with the museum's repatriation team, which works with Native American communities on returning ancestors' remains.

They also spent time in the bioinformatics lab downloading large data sets and learning how to analyze the information. And they learned to extract and analyze their own DNA.

Malhi said organizers tried to pair students in such a way to allow peer-to-peer learning, pairing a student with biological sciences background with a humanities background.

A hallmark of the workshop, said Jessi Bardill from East Carolina State University, is the discussions.

"We're working to build up a professional community so we can continue the conversations" about identity, intellectual property and more, she said. Bardill also taught at the 2011 workshop.

Instructors come from the University of Washington, Stanford University, the University of California system and other campuses.

Francine Gachupin, a Jemez Pueblo whose speciality is population genetics, is an assistant professor in the Department of Family and Community Medicine at the University of Arizona. She spoke about the ethics of biospecimen use and the recent case of the Havasupai people suing the Arizona State University Board of Regents.

Back in 1989 the members agreed to have their blood drawn for diabetes research, but their blood was later used by other researchers for mental health research and other studies without the Havasupai's knowledge, Gachupin said.

"That's why SING is so important," she said, to allow student to understand the science, the history, the legality of different cases "so they can understand the full breadth of all the issues involved."

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