[Pirateninfo] Damned by your own DNA

[pcl at jpberlin.de]

The Australian, Ausgabe vom 12.09.2005
http://www.theaustralian.news.com.au/common/story_page/0,5744,16567754
%5E28737,00.html

Damned by your own DNA

As the stockpile of the public's genetic information grows, so does 
the ability of employers and insurers to abuse it, write Leigh Dayton 
and Karen Dearne
 
REBECCA Harford received bad news in the mail three years ago. It was 
a letter from her insurer advising her that her request to increase 
her death and disability coverage had been denied. The reason? Bad 
genes. "It was a shock," she confesses.

Fortunately for Harford and her family, the decision was reversed 
after her medical specialist spoke to the insurer. He pointed out 
that although Harford does have a potentially fatal disorder called 
haemochromatosis, it's totally manageable. 
But what if that hadn't been the case? What if the insurer had not 
only knocked Harford back but provided the information to a potential 
employer, to researchers studying the disease, to relatives, to, 
well, anybody? Under Australian law, it's possible. 
Australian Law reform Commission president David Weisbrot says this 
can occur because there are enormous "gaps and shortfalls" in the 
legal protections on personal genetic information. He points to a 
patchwork of federal, state and territory laws, guidelines and 
practices, many of which overlap while leaving gaping holes through 
which sensitive genetic details may leak out."There's no crisis now, 
but we are on the cusp of [problems] happening in more forceful and 
challenging ways," warns Weisbrot. 
He points to disturbing precedents in Europe. Earlier this month a 
German governmental council recommended a new law to prevent 
employers discriminating against employees with unhealthy genes. The 
move came after a teacher was denied a permanent job because her 
father had Huntington's disease. She had to go through the courts to 
reverse the decision. 
Weisbrot was delighted when last week the Senate passed a motion put 
forward by South Australian Democrats senator Natasha Stott Despoja 
calling on the federal Government to implement laws to protect 
genetic privacy and prevent genetic discrimination. 
"This is really the first time the Government has acknowledged that 
there are gaps in our laws," says Stott Despoja, who has been 
campaigning on the issue since 1997. "It feels like my life's work at 
the moment." 
Weisbrot may well feel the same. In March 2003, after a two-year 
inquiry, the ALRC tabled in parliament a report on the protection of 
human genetic information in Australia, titled Essentially Yours. 
Until last week, the only response the Government had made to the 
internationally hailed review was to budget $7.6 million over four 
years towards establishing an advisory body on human genetics, as 
recommended in Essentially Yours. The Human Genetics Advisory 
Committee is expected to be up and running early next year. 
Spokespersons for federal Attorney-General Philip Ruddock and Health 
Minister Tony Abbott say they are preparing a "whole-of-government 
response" to the ALRC report, to be ready soon. 
Weisbrot is philosophical. "I'm not so fussed about the timing, but 
about the comprehensiveness and adequacy of the response," he says. 
Meanwhile, science and technology move on, creating the prospect of 
more modern dilemmas for people such as Harford. According to experts 
such as Weisbrot, similar tensions are set to rise as genetic tools 
are used to answer questions of human origins and migrations, solve 
crimes, reveal family ties and improve health through effective 
testing and treatment. 
To date, researchers' enthusiasm for population genome databases has 
not been matched by the would-be subjects. Earlier this year, a 
privately funded project that aims to collect blood samples from 
100,000 indigenous people worldwide sparked strong opposition from 
community leaders who say that the grab for DNA is nothing short of 
biopiracy. The $US40 million ($51.6 million) Genographic Project, 
sponsored by the National Geographic Society and computer 
giant IBM, "is essentially a renewed attempt to further the much-
protested Human Genome Diversity Project", according to Debra Harry 
of the Indigenous Peoples Council on Biocolonialism. 
Although the stated aims are to chart the migratory spread of people 
from Africa throughout the world, the IPCB is not convinced that this 
and similar projects are free of commercial motives. "Human genes, 
cell lines, data and products derived from human genes are patentable 
under US law and promoted in international trade agreements," Harry 
says. As well, she points out the inevitable temptation to retain and 
re-use DNA samples obtained for one purpose for something completely 
different. 
The American Havasupai tribe found this out to its dismay when a 
scientist allegedly re-used tribal blood samples and handprints given 
for research into the causes of diabetes for separate studies into 
schizophrenia and inbreeding. Members of the isolated, inter-married 
Havasupai tribe are suing the University of Arizona and the Arizona 
State University over the matter. They say their samples were used 
without consultation or consent and are claiming damages for the 
breach of trust. 
Meanwhile, Icelanders are rethinking their intimate relationship with 
deCODE Genetics, a private firm that in 1998 won a licence from the 
government to build a central database containing tissue samples and 
genetic information from every one of the nation's 280,000 people. 
Some now fear their gift of a "genealogical and genetic treasure-
house", which was to help find cures for cancer, asthma, Alzheimer's 
and heart disease, has become a commercial monopoly exploited for 
financial, rather than medical, gain. 
The company's licence is being challenged in court over privacy 
concerns and on the basis that the database does not comply with the 
nation's constitutional guarantee that "everyone shall enjoy the 
privacy of his or her life, home and family". Iceland's Supreme Court 
recently ruled in favour of a young woman who filed a suit to prevent 
her deceased father's records being transferred into the database, on 
the grounds that it would be possible to infer hereditary health 
characteristics from the information. 
Reykjavik-based deCODE remains confident, however, saying that after 
five years, only 7 per cent of the population has opted out of the 
database. 
In contrast to the rich genetic information stored on research 
databases, criminal profiling reveals surprisingly little 
information, at least for now. A DNA fingerprint is essentially a 
biological barcode that indicates sex. So when 600 men in Wee Waa, 
NSW, volunteered five years ago to have their DNA tested after a 
woman was murdered, they should have had just one concern: the fate 
of their sample, physical and electronic. At present, there's a 
jurisdictional jumble of safeguards for protecting information stored 
on police computers. 
Worse, there are similar inconsistencies about who collects physical 
samples, such as saliva or blood, and how they are stored. 
In the UK, assistant information commissioner Jonathan Bamford says 
the recent extension of police powers to take DNA samples and the 
removal of specific requirements to delete these and fingerprint 
details where police have no further interest in an individual "are 
further evidence of a relentless acquisition of more and more 
identifying particulars about the population". 
As concern mounts about law enforcement agencies' retention and use 
of forensic DNA samples, trouble is brewing closer to home. According 
to Essentially Yours, roughly 3000 paternity tests are carried out 
yearly in Australia. Only a few are court-ordered. As television 
programs such as CSI: Crime Scene Investigation show, it's easy to 
get telltale DNA from a toothbrush, comb, glass or crumpled tissue. 
Despite the implications for families of paternity tests, no formal 
regulations exist about consent or accreditation of testing 
laboratories. What's more, a quick Google search turns up dozens of 
do-it-yourself paternity testing kits available on the net for about 
$200. 
And then there are the Guthrie Cards, containing heel-prick blood 
samples collected from every Australian baby at birth. The samples, 
collected with parental permission, are used to test for diseases and 
conditions such as cystic fibrosis and hypothyroidism, and are 
supposed to be destroyed. Few are. If parliament acts, they may be 
soon. 
The news that 21st-century science may give 20th-century law a sharp 
kick heartens Harford. "It's a fine line between trying to encourage 
people to check things out and being scared of outside consequences," 
she says. "Health is the most important thing."