Law researchers say an agreement between a northern Hawke's
Bay hapu and a state science company provides a model for
controlling the use of intellectual property arising when
whole communities are genetically tested.
"The law's got to come to grips with this - why should people
go into research which is going to be important, and yet have
no control over who's going to get the gains from it and how
it's going to be used," said Professor Mark Henaghan, dean of
Otago University law school.
He was speaking in Wellington after leading a human genome
law project at the university which today released its final
report on law-changes and regulations needed to cope with
increasing use of human DNA for research, screening and
manipulation of embryos.
The "very exciting" framework between Te Iwi o Rakaipaaka and
the Environmental Science Research Institute (ESR) allowed
the 3000 Maori to retain control over use of the research
findings and any intellectual property benefits, he said.
"It can be a model, I think, for other groups."
The longitudinal "health and ancestry" study seeking genetic
causes for serious diseases in the community and comparing
them with lifestyle and environmental factors achieved
notoriety in 2006 in a row over use of the genetic data for
other research.
One researcher, Rod Lea, disclosed findings that men in the
study with an over-representation of monoamine oxidase (MOA)
- dubbed the "warrior gene" - were associated with aggressive
behaviour.
The findings were reported by some media as implying Maori
men might have a genetic predisposition to aggressive
behaviour.
"It had all sorts of adverse reactions...it had an effect on
these people," said Prof Henaghan.
Though the MOA gene was found across ethnic boundaries, the
publicity left members of the hapu concerned about the
research.
Prof Henaghan said the case highlighted issues about the use
of genetic material ending up with an ethnic group being
stigmatised.
"They are still working through protocols on how you do
research on a whole community to make sure if feels safe and
confident," said Prof Henaghan.
Prof Henaghan said the case also highlighted issues about
access to stored tissue which could be used for research.
He proposed archives of tissue collected in hospitals, labs,
universities, DNA banks, private researchers and fertility
clinics should have tighter controls over what research was
conducted, with greater obligations on researchers to explain
findings in a way that was not likely to be misinterpreted.
Registration and licensing of collections is recommended as a
way of imposing stricter control and regulation.
A name, residential address, and (preferably residential) telephone number is required from readers who comment on ODT Online. These details will not be visible to site visitors.