Colloquium Summary: Global Group Tackles Indigenous Health

Individuals from as far away as Australia gathered on Georgetown University’s campus Jan. 7-8 to discuss ways to protect the rights of indigenous communities in medical research, particularly with the advent of genetic and genomic technologies.

The event—co-sponsored by the O’Neill Institute for National and Global Health Law and the U.S. Department of Health and Human Services—brought together 12 health, legal, medical, and scientific experts to shed light on the subject.

“We are most honored here at Georgetown to have such a distinguished set of people,” said Jeffrey Collmann, director of the O’Neill Institute’s Center for Disease Prevention and Health Outcomes.

Howard Federoff, executive vice president of Georgetown University Medical Center, NHS Dean Bette Jacobs, and Gregory Downing, program director of Personalized Health Care at HHS, offered welcoming remarks.

“We here at Georgetown are trying to make our little, incremental contribution to this field,” said Federoff. “Vulnerable populations need to be fully included in the application of any of the technologies that you will be discussing.”

“This [topic] has been a long-term interest of mine,” added Jacobs, a member of the Cherokee nation.

Jacobs also recounted Georgetown’s longtime history of inclusiveness and a story she had learned from her father about giant redwood trees.

“The redwood trees have a very shallow root system,” she said. “But that root system grows together. Essentially they hold each other up. [The] responsibility to care for all people is one that I entrust to the people here.”

“I really want to commend Howard and Bette for stepping into this space,” said Downing, who noted that the forum could help “change the course.”

Participants discussed a variety of challenges related to ensuring reciprocal benefits to indigenous populations and continued advancement in genomic science.

Some of those challenges include appreciation for cultural and spiritual traditions, past abuses by the scientific community, language barriers, and a lack of specific information about the benefits of genomic science to vulnerable communities.

Novel approaches to further genomic research include clinical workforce education and training for indigenous populations and scientists alike. Jacinta Elston, associate professor of family medicine at James Cook University in Australia, said that indigenous peoples must be active participants in research on their communities.

“Our communities do own the story and continue to own the story,” said Elston, an aborigine and South Sea islander. “…Rigorous research in an indigenous setting requires indigenous engagement.”

Doris Cook, another speaker, worked at the Canadian Institutes of Health Research and helped develop research ethics protocols for projects involving the country’s aboriginal communities.

Cook, a member of the Akwesasne Mohawk Nation, said scientists must regain the trust of the aboriginal communities after past exploitative missteps.

“Much of this problem relates to a lack of trust which is based on the historical experience aboriginal people have had with researchers,” she said.

While the challenges are clear, the potential benefits of genomic science are also significant. Gerardo Jimenez-Sanchez, director general at the National Institute of Genomic Medicine in Mexico, discussed the price of not developing genomic medicine.

“We developed a plan [in Mexico] as to how much it would cost to develop genomic medicine and how much will it cost not to develop genomic medicine,” said Jimenez-Sanchez, who remarked that the disparity exceeded hundreds of millions of dollars.

The 2009 forum follows up on several events that NHS and the O’Neill Institute have convened on genomics and personalized medicine and health care. Organizers plan to publish the proceedings of the event.