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Posted 21 May 2001   For week ended May 18, 2001
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Sent on Mormon-News: 18May01

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."


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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