MEMBERS of an indigenous people in western Canada who donated blood as part
of a genetics study nearly 20 years ago are demanding that the samples be
returned. They say that the scientist who took the samples, now an Oxford
professor, has since used them without their consent for entirely different
research. 鈥淚 signed a paper releasing my blood for arthritis research. Nothing
else. There was no mention of any other kind of research. I want it back,鈥� says
Larry Baird, chief of the Ucluelet First Nation, which is part of the
Nuu-chah-nulth people.
鈥淭his is a major issue around informed consent, when you tell people one
thing and you do something different,鈥� says Michael McDonald of the Centre for
Applied Ethics at the University of British Columbia (UBC). 鈥淭his is a serious
problem with indigenous populations around the world. They鈥檙e very, very
补苍驳谤测.鈥�
The researcher who took the samples, Ryk Ward, head of the department of
biological anthropology at Oxford, says in a written statement: 鈥淚t is common
practice to retain samples for potential further research use, however, all
those who donated blood samples . . . at any stage they may withdraw their
consent to participate in this research.鈥� He offered to destroy any samples or
hand them to another repository.
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Ward, then at UBC, took samples from 883 members of the group during the
early 1980s to look for genetic markers for an unusual form of arthritis. But in
work published during the 1990s Ward used some of the samples to analyse genetic
diversity in the Nuu-chah-nulth in relation to how and when humans populated the
New World. In the Proceedings of the National Academy of Sciences (vol
88, p 8720), he says the material he used was collected 鈥渁s part of a biomedical
study鈥� between 1984 and 1986.
Several months ago, David Wiwchar of the Nuu-chah-nulth Tribal Council
newspaper Ha-Shilth-Sa published an article partly based on Ward鈥檚
research. Members of the community, recognising Ward as the person who took
samples for arthritis research, took the matter up with the Tribal Council.
The council has shown 快猫短视频 a copy of one of Ward鈥檚 consent
forms, signed in 1983, which mentions only arthritis and other rheumatic
diseases. Council officials say Ward never asked for further consent.
Richard Spratley of UBC鈥檚 office of research services says that based on the
original consent form, the university would have required Ward to get further
permission to conduct other studies. But by the time Ward embarked on the
genetic diversity research he had moved to the University of Utah.
Arthur Caplan, an ethicist at the University of Pennsylvania, can鈥檛 see the
problem as long as no one is identified. 鈥淯nless you can show that it harmed,
hurt, or disenfranchised someone, legally nothing is going to happen,鈥� he
says.
Baird says the tribal council will decide what action to take at a meeting
this week. 鈥淢aybe a small delegation of First Nation people on his doorstep at
Oxford may help,鈥� he says.
