Long journey home just the beginning

Page 13

After 20 years and a journey around the world, hundreds of vials of Nuu-chah-nulth blood have been returned home to the West Coast.

The people there welcome their return, but remain critical of the system that allowed the blood to be used for a variety of different research studies over two decades without their permission.

Dr. Richard Ward took the blood between 1982 and 1985 for a $330,000 arthritis study. The study was funded by Health Canada and hoped to show a genetic predisposition of the Nuu-chah-nulth to rheumatic disease; the research was to be used to find a cure or ease the suffering of the Nuu-chah-nulth people. At the time, it was the largest-ever genetic study of a First Nation population in Canada.

Ward's team of researchers interviewed 82 per cent of the 2,300 adult Nuu-chah-nulth living in 13 different reserve communities, as well as members living away from home in Port Alberni, Tofino, Nanaimo and Victoria. Of those surveyed, 883 people were selected to give 30 ml of blood so research could begin.

"I remember them coming around with a whole team, and they took blood from all my eight children. It was in the summertime, and they took the blood right on our porch," said Gertrude Frank. "They told us they were going to find out why so many of us have arthritis. I was interested because my mother had arthritis, I have arthritis really bad, and some of my children have it, including my oldest daughter who has it really bad now," she said.

Ward's study of the blood, however, failed to provide the information needed, and in 1986, he left his position as associate professor of medical genetics at the University of British Columbia taking the Nuu-chah-nulth blood with him.

He accepted a position as associate professor of human genetics at the University of Utah where the U.S. department of Health offered $172,000 to further study the blood. Again, his study turned up nothing and Ward shelved the project publishing a final report in 1987.

In 1996, Ward accepted a position as the head of the newly created Institute of Biological Anthropology at Oxford University in England, but not before publishing a 1991 paper that made public the results of an analysis of the genetic sequences of the Nuu-chah-nulth blood. In the paper he reported Nuu-chah-nulth had been a distinct genetic group or "lineage cluster" for between 41,000 and 78,000 years. Important because the research calls into question the Beringia land bridge theory. Many anthropologists believe First Nation people came from Asia via a land bridge to Alaska 15,000 to 33,000 years ago. Ward concluded the Nuu-chah-nulth genetic diversity existed prior to the assumed date of migration to the Americas. Ironically, the paper concluded by thanking the Nuu-chah-nulth for their collaboration, despite their never giving Ward authority to use their blood for anything but the original arthritis study.

Ward continued to use the Nuu-chah-nulth blood for his own diverse work, and loaned it to other researchers for a variety of other studies.

Nuu-chah-nulth blood was used to produce hundreds of academic papers on topics as diverse as HIV/AIDS and population genetics.

"He profited at our expense," said Larry Baird, who offered his blood and the blood of his children for what he saw as a very important study.

"We were of the understanding that we would have the results of the study within a year, but he never told us anything after. He disappeared," he said. "He published more than 200 papers and became the top guru in his field because he was carrying our blood around with him. He used us like cheap guinea pigs."

People living with rheumatic diseases, such as arthritis, will do just about anything to ease the suffering.

"Having arthritis pain is like a constant toothache. You can't get at it or do anything about it. It just robs you of your power and energy," said Baird, who suffers the debilitating effects of the disease, as id his late mother, as does his daughter.

Ahousaht Elder Cosmos Frank cares for his wife of 55 years, crippled with the same form of arthritis that took the life of his eldest son.

"Our family has been hit pretty hard by arthritis. My wife, Katherine, and four of our daughters all have it. Some days my wife can't even walk. It's really, really hard to watch someone you love suffer like that when you can't do anything to help ease their agony," he said. "It's hell."

In 1999, their eldest son died of pneumonia, age 47. Frank believes his son succumbed to the respiratory condition because he was weakened from a 10-year battle with arthritis.

The consent form Ward had community members sign made it clear that the study the blood would be used for was about rheumatic disease. But many have come to the conclusion that the arthritis study was a ruse. During the time he was drawing blood samples in the Nuu-chah-nulth community of Ahousaht, Ward was interviewed by a BBC television crew for a documentary called In Search of the First Americans. On it Ward said he was tracing the evolutionary history of First Nations by studying their DNA.

"I remember it happened in the summer, because I got called up from swimming to go to the clinic," said Marla Jack, who was 13 when her blood was taken. "It was only supposed to be used for arthritis research and to help others. The blood is technically still mine, so I don't see how they can do anything other than that without my permission. Just because we're First Nations doesn't mean you can do whatever you want with us."

Edwin Frank said Ward knew exactly what he was doing and he should have been professional enough to tell them what was going to happen with the blood.

"To have a professional person do that kind of thing to me is a shock," he said.

"If he knew what he was going to do with the blood, he should have been up front with us," said Noreen John, who was 22 when her blood was taken.

When the story aout the misuse of the Nuu-chah-nulth blood broke in September 2000, academics across Canada and the United States were furious.

"It's a major case and a startling example of how we don't do a very good job of training our scientists about the basics of research ethics," said Dr. Michael McDonald, chair of the Centre for Applied Ethics at the University of British Columbia. Numerous meetings sponsored by Health Canada, the Canadian Institute of Health Research, the National Council on Ethics in Human Research, and a variety of United Nations organizations were called to discuss what went wrong in the Nuu-chah-nulth case.

Around the same time, the Institute for Aboriginal People's Health was launched, and the case became a priority for the new organization.

"This case was part of a larger move that was going to treat Aboriginal people with respect," said University of British Columbia clinical geneticist Dr. Laura Arbour, who took an interest in the blood boondoggle when she first heard of it in 1999. "It's not uncommon for related secondary research to happen, but what made this case unique was the secondary research was completely unrelated to health. It was about lineage," she said.

In an interview with the Nuu-chah-nulth newspaper Ha-Shilth-Sa, Richard Ward said he would "do basically anything that's feasible to set matters to right," including sending the blood and associated data to another repository. On Feb. 14, 2003, after bicycling home from his Oxford university office, Ward suffered a heart attack and died. The next day, Arbour received a phone call from a colleague a McGill University in Montreal, concerned that the blood could become the property of Oxford where it might be destroyed or lost to the university forever. He advised Arbour the time was right to bring the blood back to Canada.

Laura Arbour contacted Simon Read, director of the Nuu-chah-nulth community and human services department, who contacted Oxford's Laura Peers.

Ward's idow, Maria Ramirez, was "anxious that the blood samples be returned," Peers wrote in an e-mail to Read.

At a Nuu-chah-nulth Tribal Council meeting in July 2003, chiefs and delegates voted in favor of the formation of a Nuu-chah-nulth Research Ethics Committee, responsible for reviewing all research proposals involving Nuu-chah-nulth subjects and the return of the blood samples from the Institute of Biological Anthropology at Oxford.

"People kind of forgot about the blood study and I was the only one asking questions," said committee chair Larry Baird. "It bugged me that I didn't know where my blood had gone and what the results were if any," he said.

In January 2004, nine boxes of documents, and hundreds of vials of Nuu-chah-nulth blood arrived at the University of British Columbia via medical courier. The blood was placed in a freezer at the university. The documents were taken to the children's hospital in Vancouver where they sit in the corner of department head Rob McMaster's office.

Over the past year, the blood has remained untouched and its return kept quiet as members of the ethics committee studied their job roles and responsibilities. This month the committee will bring their first formal report to the chiefs to discuss ideas on what to do with the material.

"My persistence paid off, and the [tribal council] mandated we set up a committee to deal with the blood issue, and set up a research ethics committee. There were never any controls before, and our people put a lot of trust in researchers. So now we'll know who's coming into our communities, and we'll have the ability to make sure they follow our protocols and rules," he said.

"Aboriginal communities are way ahead of the game [by setting up research ethics boards and committees]," said Arbour. "They're not the only ones who want research results to come back to them, and these models are great models for all," she said.

"They're important because they know what's going on in the