Alert over gene database
Karen Dearne

SEPTEMBER 12, 2005

RESEARCHERS in Western Australia are forging ahead with plans for 
a human genetic database - a BioBank - containing the DNA of every
consenting adult in the state.

The WA Genome Project will build on the population records collected
by the state over the past 30 years, and linked together through new
database technology.

It will include all births, deaths, hospitalisations and mental health
service contacts, along with cancer and other disease registries.

The implications are massive for individuals who might be identified
and who could risk being discriminated against by organisations such
as health insurers and employers.

[...]

Western Australia's data collection is managed by the Health
Department in conjunction with the University of Western Australia's
school of population health and the Telethon Institute for Child
Health Research.

Institute director Fiona Stanley has been a passionate advocate for
the use of population data for the public good.

She has argued there are "economic and moral obligations" to make use
of the existing data.

"Compared with studies where consent needs to be sought from
participants, using record linkage is extraordinarily cost-effective
and results in reliable data on issues that are difficult to obtain in
other direct ways," Professor Stanley said in a recent submission to
the federal Privacy Commissioner.

"For example, in studies on psychiatric illnesses, abortion and drug
use, it is very difficult for participants to talk about these things.

"By using linked data, researchers don't have to contact people and
ask them to provide information."

[...]

Source: "The Australian IT"
http://australianit.news.com.au/articles/
0,7204,16568250%5E15306%5E%5Enbv%5E,00.html

Cheers, Steve..

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