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By Kent Larsen
BYU Molecular Genealogy Project Accused of Ethical Lapse in New Zealand
AUCKLAND, NEW ZEALAND -- An ambitious BYU project to create a genetic
world map for use by family history researchers came under fire
yesterday for failing to get the approval of a local ethics
committee. The claims came after representatives from the project
collected blood samples and genealogical data at an LDS chapel in the
Henderson neighborhood of Auckland, New Zealand. But the project'
public relations director, Ugo Perego, claimed that the project
didn't need local approval.
The Molecular Genealogy Project was started last year by BYU
Professor Scott Woodward. Its goal is to collect blood samples and
four-generation pedigrees from approximately 100,000 individuals,
representing 500 different populations around the world. Looking at
250 different genetic markers, the project hopes to not only create a
genetic map, but also help reconstruct genealogies using genetic
information.
The project's staff are visiting locations around the world to
collect these samples. [A schedule of the project's future stops is
available on its website.] But at the New Zealand stop (scheduled
until Sunday) a local newspaper reported that the project hadn't
sought approval from an New Zealand ethic committee.
In the US, research funded by the federal government involving human
subjects must be reviewed by an ethical review board, and if the
research is done at another institution or if the review board isn't
familiar with the location, the approval of a local review board is
also required.
The Molecular Genealogy project believes that the review it got is
sufficient, "It's my understanding that wherever we go we can take
that approval with us." That review came from BYU's Human Subjects
Institutional Review Board, chaired by physical education professor
Shane Shulthies. Under federal guidelines, that board should have
determined if the approval from an ethics board in New Zealand, or
elsewhere, was necessary.
The chairwomen of two Auckland ethics boards say that it was
necessary. "I wouldn't think that the Americans would allow us to do
research in their country without their ethics committee system's
approval, and the same applies here," said Kay Worrall, one of the
chairwomen.
The other, Wendy Brandon, said that the projects' approval in the US
might mean that it would have little trouble getting approved in New
Zealand, but emphasized that the approval was still necessary.
Brandon also expressed concern about the project's consent form,
saying it gave participants insufficient time to think about giving
consent and allowed use of stored DNA for unrelated future research
without further approval.
But the status of the Molecular Genealogy project may not be that
clear. The project is privately funded -- by LDS billionaire James
Sorensen and by philanthropist Ira Fulton -- and therefore doesn't
have the restrictions of federally-funded research.
But even if the project doesn't have any restrictions on it, the idea
that researchers crossing international borders would not have
restrictions strikes Dr. Michelle Larsen, a tuberculosis researcher
at Albert Einstein College of Medicine, as wrong. "The Molecular
Genetics Group at BYU obviously did not think through the consent
process in other countries. Every country has its own policies about
medical sample collection and privacy."
Source:
Mormons trigger NZ ethical concerns over DNA
Auckland New Zealand Herald 17May01 D3
By Martin Johnston: health reporter
See also:
Y. researcher curious about your bloodlines
Deseret News 15Aug01 D3
By Jeffrey P. Haney: Deseret News staff writer
DNA study seeks family trees and blood samples
BYU Molecular Genealogy
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