Mormons trigger NZ ethical concerns over DNA

By MARTIN JOHNSTON health reporter

A Mormon university has run foul of New Zealand health-ethics experts with its international programme of collecting blood for a DNA and family-tree database.

Researchers from Brigham Young University in Utah have taken blood from more than 20,000 people in the first 14 months of their worldwide quest for 100,000 DNA samples.

They also ask donors for a biological family tree going back four generations, which is matched to their DNA sample.

The computer database will show what genetic "markers" people carry now and in the past - and, importantly, where and when they were born, in effect creating a genetic world map.

Genealogists will not be able to track specific individuals as names will not be released.

But the database could in future tell inquirers who submit their own DNA where and when their great-great-grandmother was born, narrowing the ancestral hunt.

Medical workers took samples from volunteers in Auckland last night at a public meeting at the Church of Jesus Christ of Latter-day Saints in Henderson.

Similar sessions are planned in Christchurch tomorrow and on Saturday.

But the researchers have not sought approval from any New Zealand ethics committees.

Ugo Perego, public relations director of the university's Molecular Genealogy Research Group, said yesterday that the project's organisers believed it did not need specific New Zealand consent.

It had been approved by the Human Subjects Institutional Review Board, an independent body with a branch at the university, he said. "It's my understanding that wherever we go we can take that approval with us."

But Kay Worrall and Wendy Brandon, the chairwomen of the two Auckland ethics committees financed by the Ministry of Health, disagreed.

"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," Mrs Worrall said.

Wendy Brandon said that while US approval alone was insufficient, it suggested the project would have little difficulty gaining consent here.

Mrs Worrall said that if potential participants gave blood on the same evening as first having the project explained to them, they would have had insufficient time to think about it and possibly talk with their families before agreeing to take part.

She was also concerned that the consent form gave donors the option of allowing their stored DNA to be used in future research without the specific, additional approval of the donor.

Ingrid Winship, the Auckland Medical School's associate professor of clinical genetics, said New Zealand ethical approval was necessary because of the sensitivity of DNA research in areas such as privacy and cultural impact.