For the hundreds of Nuu-chah-nulth people suffering the debilitating effects of arthritis, Dr. Richard Ward’s groundbreaking study in the early 1980s was like a beacon of hope. But in the following years of no communication between medical researchers and their Nuu-chah-nulth subjects, that light has dimmed, flickered out, and has almost been forgotten.
Yet, after 15 years of waiting, many Nuu-chah-nulth people are now discovering that the blood they volunteered to help find a cure for rheumatic diseases has traveled the world, and has been used in a variety of genetic anthropology studies; outside the boundaries of the consent forms they signed.
From 1971 to 1987, Dr. Christopher J. Atkins was the resident Rheumatologist for Nanaimo. Because of lack of Central Island cases, Atkins branched out to include patients in Port Alberni, Comox and Campbell River.
It was during his work in Port Alberni that he noticed an extremely high incidence of various forms of rheumatic disease in Nuu-chah-nulth people, and was alarmed by the high occurrence of multiple types of rheumatic diseases within the same
For the hundreds of Nuu-chah-nulth people suffering the debilitating effects of arthritis, Dr. Richard Ward’s groundbreaking study in the early 1980s was like a beacon of hope. But in the following years of no communication between medical researchers and their Nuu-chah-nulth subjects, that light has dimmed, flickered out, and has almost been forgotten.
Yet, after 15 years of waiting, many Nuu-chah-nulth people are now discovering that the blood they volunteered to help find a cure for rheumatic diseases has traveled the world, and has been used in a variety of genetic anthropology studies; outside the boundaries of the consent forms they signed.
From 1971 to 1987, Dr. Christopher J. Atkins was the resident Rheumatologist for Nanaimo. Because of lack of Central Island cases, Atkins branched out to include patients in Port Alberni, Comox and Campbell River.
It was during his work in Port Alberni that he noticed an extremely high incidence of various forms of rheumatic disease in Nuu-chah-nulth people, and was alarmed by the high occurrence of multiple types of rheumatic diseases within the same patient or family grouping.
Atkins estimated that two thirds (66 per cent) of Nuu-chah-nulth suffered from rheumatic diseases, which include: rheumatoid arthritis, episotic inflamatory arthritis, systemic connective tissue disease, lupus, Reiter’s disease, spondylitis, and arthralgis (joint pain without swelling).
Related: http://www.hashilthsa.com/archive/news/2013-07-22/blood-taken-research-destroyed
Related: http://www.hashilthsa.com/archive/news/2013-07-22/ward-responds
Atkins approached the B.C. Ministry of Health on the possibility of doing a study, and was introduced to an internationally recognized genetic researcher from the University of British Columbia named Dr. Richard (Ryk) Ward. Schooled at the University of Auckland, New Zealand in Anthropology and Botany, before attaining an M.Sc. and Ph.D. in Human Genetics from the University of Michigan, Ward had five degrees, and a large list of professional and publication experiences.
“We put together a research plan that was going to address the nature and extent of rheumatic diseases of the Nuu-chah-nulth peoples,” said Atkins. “What I was interested in was the family clustering of multiple rheumatic diseases, because there’s clearly a genetic component to a lot of rheumatic diseases. 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.”
In the early 1980s, Nuu-chah-nulth people were becoming involved in groundbreaking medical research. Blood, hair, and tissue were being volunteered to scientists looking into everything from Mercury levels in seafood, to causes of Diabetes and Arthritis.
Dr. Ward applied for federal funding from Health Canada to: “[give] clinical definition of rheumatic disease in the Nootka; identification of all affected individuals; epidemiological analysis; definition of familial aggregation of rheumatic disease; and finally, assessment of health needs of the Nootka, with respect to the treatment of rheumatic disease ... Detailed studies of rheumatic disease in Native Indian groups is likely to provide considerable immunogenetic insight into the pathogenesis if the disease.”
Health Canada agreed to fund Ward’s study, and with a budget of $330,000, a team of doctors, nurses and UBC medical students initiated the largest-ever genetic study of a First Nations population in Canada.
“I would like to carry out a proper study of rheumatoid arthritis in Ahousaht, and subsequently in other bands,” wrote Dr. Ward in a 1981 letter to the Ahousaht Chief and Council. “We feel that if a proper study is carried out it will identify all people who have a problem with their joints and physiotherapy treatment can be started as a way of helping them. In order to carry out the study, I would like to survey every person in Ahousaht so that we can be sure exactly who has a problem with rheumatic disease and who needs help.”
The first stage was to interview as many Nuu-chah-nulth people as possible, by going “family by family, or household to household ... survey of all major reserve communities, as well as the major urban populations of the Nuu-chah-nulth”.
“He said the disease was very common within the Nuu-chah-nulth people and that he was going to work on it so we could get help,” said Arlene Paul, the Community Health Nurse in Ahousaht, and a volunteer for the study. “People with arthritis will do anything to get help, and that was the understanding they got from the doctors was that this was really going to help us.”
According to Ward’s final report (published in 1987), the survey involved an interview and completion of a questionnaire, and “resulted in evaluating 1,878 individuals of the 2,300 adult Nuu-chah-nulth population (82 per cent). This survey encompassed the 13 distinct reserve communities (1,210 individuals) and the urban population of Port Alberni, Tofino, Nanaimo, and Victoria (688 individuals).”
Of the 1,878 people surveyed, 883 people (44.3 per ceny) were then selected to give 30 ml of blood, so research could begin to find out whether there was a genetically inherited aspect to rheumatic diseases.
“In Canada and the United States nearly three million adults are likely to experience a significant degree of functional disability due to rheumatoid arthritis, while the other forms of rheumatic disease are likely to affect another million individuals,” said Ward. “In Caucasian populations the overall prevalence is of the order of 1 per cent. The prevalence rates for rheumatoid arthritis in adult Native Indians are in the range between three per cent and eight per cent.”
“There’s a lot of fear about arthritis. Almost everybody amongst Nuu-chah-nulth had a relative who had a severe form of arthritis, so there was hope there that there would be some discovery,” said Dr. Harvey Henderson, who has treated numerous Nuu-chah-nulth people suffering from rheumatoid arthritis cases since his arrival on the west coast in 1972. “The expectation would be that there would be new discoveries about the cause of arthritis which could then lead to new treatments, new preventions, and a new understanding of this disease.”
Between April 1, 1982 and September 30, 1985, Ward and his associates traveled throughout the Nuu-chah-nulth territories collecting the 883 blood samples he hoped would lead to the discovery of methods of treating rheumatic diseases.
As is required for research involving Human subjects, participants were required to sign a consent form explaining the purpose and goals of the research study.
The consent form dealt specifically with rheumatic diseases, and gives signed, dated and witnessed permission for the taking of blood, and the study of that blood “for genetic markers to see if heredity (sic) factors are important in this problem”.
People with, and without personal symptoms or family histories of rheumatic diseases were both involved in the study, which also included clinical examinations and physiotherapy tests.
But after four years of active fieldwork, lab work and research, everything seemed to have stopped.
In 1986, Ward left his position as Associate Professor of Medical Genetics, Epidemiology and Biometrics at UBC’s Department of Medical Genetics to take a position as Associate Professor at the University of Utah’s Department of Human Genetics in Salt Lake City.
“This will anger some of you as he seemed to promise so much,” N.T.C. Medical Advisor Dr. Harvey Henderson wrote in a July 1988 letter to the Tribal Council. “Dr. Atkins reported to me that Ryk failed to find any connection with the known blood markers and arthritis in the Nuu-chah-nulth.”
Ward was unable to find what he was looking for. In his final report to the National Health Research Development Program at Health and Welfare Canada, and in a subsequent article published in The Journal of Rheumatology in May 1988, Ward wrote: “We were unable to make a satisfactory diagnosis”.
Although he identified many types of arthritis found in Nuu-chah-nulth people, he could not find the DNA evidence to substantiate his theory that Rheumatoid Arthritis is an inherited genetic condition.
“My feeling was and still is that a negative finding is still an important finding to report, that something should have been reported,” said Henderson.
This information was not, for whatever reason or rationale, shared with the Nuu-chah-nulth people and First Nations that played a pivotal role in the findings.
With his third-of-a million dollars federally funded study completed, Ward began to look for other uses for the 883 vials of Nuu-chah-nulth blood.
Ward received a $172,000 grant from the U.S. Department of Health to do further genetic studies on the Nuu-chah-nulth blood, this time in the area of anthropology.
Flashed across newspaper and magazine headlines as a study “calling the Beringia land-bridge theory into question”, Ward’s latest study showed that the Nuu-chah-nulth have been a distinct genetic grouping for between 40,000 and 70,000 years (as reported in the November 18, 1999 issue of Ha-Shilth-Sa).
Because archaeological evidence only lasts for so long in the acidic west coast conditions (the oldest Nuu-chah-nulth artifact found dates back slightly more than 4,000 years), this was seen as key anthropological evidence.
The BBC (British Broadcasting Corporation) in association with PBS (Public Broadcasting Corporation) in the United States produced a documentary called “In Search of the First Americans” which featured Ward’s research.
The documentary, aired as a NOVA program in August 1992, showed Ward in Ahousaht drawing blood from a First Nations woman while the narrator explains: “he’s trying to determine how long they’ve been here by examining DNA extracted from their blood”.
“What we’re doing is we’re tracing the history of the way in which the mutations or substitutions occurred in time, which allows us to draw an evolutionary tree,” explains Ward. “We can look at the present day distribution and see how that reflects the actual evolutionary tree of events that occurred thousands of years ago. We have a lot of diversity in this relatively small tribe. Much more than we originally expected to find. I had expected to find eight or ten lineage’s, so we were really surprised to find that we had as many as 28 or 30 lineage’s here,” said Ward, who has not responded to Ha-Shilth-Sa’s request for a formal interview.
Over the next few years, Ward’s importance grew as other anthropologists and geneticists began citing his work in their research papers.
Ward was offered a full professorial position and head of the Institute of Biological Anthropology at the prestigious University of Oxford in England; where he remains in this position today, storing the Nuu-chah-nulth blood in an on-campus freezer, where it is occasionally used for genetic studies around the world.
More well-traveled than many of the Nuu-chah-nulth people it came from, some or all of the blood has traveled from the west coast of Vancouver Island to the labs at U.B.C., the University of Alberta in Edmonton, The University of Western Washington in Seattle, the University of Utah in Salt Lake City, and the University of Oxford in England, to name only a few. Data from those blood samples are frequently borrowed by researchers from GenBank in Maryland, and incorporated in studies around the world.
“In the end, we realized there was not a genetic component, but there was indeed a very interesting set of rheumatic diseases that these folks unfortunately have,” said Atkins, who wrote a subsequent article on arthralgis (joint pain without swelling) that benefited Nuu-chah-nulth people suffering from it, as it was often misdiagnosed as a psychosomatic disorder.
“My own feelings are that there is a strong genetic component, we just didn’t find it.”
Article by David Wiwchar
