Bringing blood back to the Nuu-chah-nulth
The Nuu-chah-nulth people of Canada have high rates of rheumatoid arthritis in their community. Back in the 1980’s, the Nuu-chah-nulth agreed to participate in a genetic study on rheumatoid arthritis, so they donated over 800 blood samples to a genetic researcher, Dr. Ryk Ward, at the University of British Columbia (UBC) to conduct a research study (Dalton 2002). Dr. Ward left UBC a few years later and took the samples with him to the University of Utah in the United States, then eventually to the University of Oxford in the United Kingdom. He was unable to show a genetic basis for arthritis in the tribe, so he used the samples for other research projects and even shared the data with his collaborators. Some of these studies included human migration research, HIV/AIDS, and even drug abuse research, studies for which the tribe never agreed or gave consent.
Dr. Ward published over 200 papers throughout his career, but did not report the results directly to the tribe and never returned to the community. When the tribe found out in 2000, many tribal members were furious and upset and demanded an explanation for why samples were used for studies beyond the tribes’ intended purposes. After Dr. Ward died suddenly in 2003, many university officials and researchers including Dr. Laura Arbour, also from the University of British Columbia at that time, worked to bring the blood samples back to the Nuu-chah-nulth. The blood samples were finally returned in 2004. During the time of the transfer of the samples back to the tribe, the Nuu-chah-nulth also formed their own Research Ethics Committee to review all research protocols (Wiwchar 2004).
This case also raised issues about university control over biological samples (such as blood and DNA). University of Utah officials began to implement policies to declare samples that were collected at that university become university property. The samples cannot be removed from the university without specific permission from university officials. The case also highlighted the need for international rules and guidelines on ownership and transfer of human biological samples from one country to another.
- How would your tribe ensure that samples donated for a specific research project were used for only those specific purposes?
- If a researcher’s university has a policy on university ownership of samples, how would you ensure samples stay at that university?
- If your tribe has a data ownership policy, how would you work with the researcher and the university to find a mutual agreement on ownership?