When Larry Baird gets up in the morning and feels the twinges and pain of the arthritis in his hands he thinks of Dr. Ryk Ward and the relief his research on rheumatic diseases promised to Nuu-chah-nulth peoples.
In the early 1980s, Ward took 883 vials of blood from Nuu-chah-nulth subjects to study the high incidence of such ailments as rheumatoid arthritis, episodic inflammatory arthritis and lupus in the Nuu-chah-nulth population.
Baird runs his hands across the smooth surface of a cardboard box on July 17. It is filled with what is left of the blood from that study. That day it is scheduled to be destroyed, ending an unpleasant chapter in the Nuu-chah-nulth people’s experience with Ward, who betrayed their trust and disappointed their expectation of a cure, or at least effective treatment of their suffering.
The tale of the bad blood between the researcher and the Nuu-chah-nulth community began with optimism and enthusiasm. Ward was a genetic researcher with an international reputation. He was to probe the family clustering of rheumatic diseases in Nuu-chah-nulth-aht.
Original story: http://www.hashilthsa.com/archive/news/2013-07-22/genetic-researcher-uses-nuu-chah-nulth-blood-unapproved-studies-genetic-anth
“A genetic take on their disease might reveal the nature and mechanism of their disease which might lead to a cure or to be treated better in the future,” Dr. Christopher J. Atkins told Ha-Shilth-Sa in 2000. He was the resident rheumatologist in Nanaimo from 1971 to 1987, and developed the research plan with Ward.
Ward traveled throughout the Nuu-chah-nulth territory collecting the blood samples, and, as is required with any form of research on human subjects, getting consent forms signed.
The form dealt specifically with rheumatic diseases and the study of the blood to determine if hereditary factors play a part in their occurrence.
But after all of this effort and the participation of hundreds of people, Ward up and left town.
Over time, the Nuu-chah-nulth, including a young leader, Larry Baird of Ucluelet, wondered where the results of the study were. He and his family had been among the research subjects, but had heard nothing about the results.
They were shocked to find out that the study yielded nothing, and the Ryk Ward had transported the blood samples out of the country and was doing genetic research on them, building a prominent place for himself in the pantheon of science. His reputation soared while the Nuu-chah-nulth, who did not give their consent to this additional research, continued to suffer.
Larry Baird said that he began to read headlines and news stories about the researcher who was challenging pre-conceived notions about the origins of first peoples, and calling into question the Beringia land-bridge theory of their arrival on the continent. Ward’s study of Nuu-chah-nulth blood had determined that they had been a distinct genetic group for between 40,000 and 70,000 years. Archaeology had only been able to track their existence on the West Coast back slightly more than 4,000 years.
In the 1990s, Ward and the blood made it to Oxford University in England, and the prominent researcher took the position of head of the Institute of Biological Anthropology. The blood was kept in a freezer and loaned out to other researchers for study, again without the consent of the Nuu-chah-nulth.
Over time, medical ethicists have come to conclude that what Ward did with the blood was unethical, something the Nuu-chah-nulth believed all along.
“I gave my blood, and gave permission to take my children’s blood because they said this study would help us out,” the now late Katherine Frank told Ha-Shilth-Sa’s David Wiwchar in 2000. “To use it for something else without our permission is very wrong.”
Baird, and others, began a long struggle to have the blood samples returned to the community.
Nuu-chah-nulth custom is such that you don’t leave this world without all your parts, Baird told a group of researchers who had visited with the Nuu-chah-nulth Research Ethics Committee on July 17. The committee was formed in 2004, a result of what has become known as the “Bad Blood” controversy.
The committee is charged with protecting the community from such treatment as they experienced with Ward, so that research is conducted ethically and morally in the communities. Members have developed standards and criteria that researchers must meet before they will be allowed in the territory.
The researchers visiting that day were members of a summer institute with the Canadian Coalition for Global Health Research. They came from all parts of the world, and were specifically looking at health research and Indigenous peoples.
They had studied the Nuu-chah-nulth bad blood case, and were enthusiastic to meet with the committee.
Many researchers spoke about research being conducted in their communities without the consent of their people.
Lisa Chant of the Ngati Whatare tribe of the Maori described a similar struggle to return biological samples. “Be strong,” she told committee members. “The end of your journey is in sight.”
Then, as is the custom of her tribe, she sang a song in honor of the committee members and their efforts on behalf of the Nuu-chah-nulth people.
Rafael Alulema of Ecuador, speaking through a translator, said there were stories in his country of samples taken from unconscious people in hospital, and that the Indigenous people there had lost trust in researchers.
Lynette Barbosa, who is a tribal council support person for the research ethics committee, said while the bad blood controversy did impact people emotionally, the formation of the committee empowered the Nuu-chah-nulth people.
Darleen Watts, the chair of the committee, said part of their mandate was to get the blood back and that is what they have done. The blood would be disposed of at West Coast General Hospital and the chapter closed on the Ward research incident.
“Now we can focus our energies in other areas,” she said.
The bottom line of the whole experience, said Baird, is that “what is inside this skin is mine.”
Vic Nuefeld, who was the leader of the research summer institute, put it another way. When research is done on an issue and samples are taken, then the “blood is on loan for that purpose.” He said it was that principle itself that is a breakthrough idea.
Baird then took the blood to the hospital in Port Alberni and handed it over to chief lab technician Karin Ficsher, who sent it out with a bio-waste company for disposal.
“It’s no longer on our plate,” he told the committee. “It’s done. It’s concluded.”
Article by Debora Steel
