Damned by your own DNA

[Guest guest]

This is about Australia and was posted on another group. But it's

taking place here too. It's called genetic discrimination and we should

be fighting it tooth and toenail. If your DNA shows the cancer gene,

you won't be hired or get insured or both...for example. Now they have

thrown obesity into the mix. When will we put our foot down to stop

this nonsense?

Anna

 

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

12sep05

 

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.

 

 WHERE ARE YOUR GENES?

# DNA is collected for genetic tests for: * Inherited diseases such as

Huntington's and cysticfibrosis Genes that predispose people to

diseases such as heart disease or familial breast or colon cancer

# Paternity and kinship (proof for immigration)

# DNA fingerprints (criminal investigation)

# Research

# Risk-rated insurance for income, disability or death

# Employment (predisposition to unusual workplace hazards, little-used

in Australia)

# Sports (genes for fast-twitch or slow-twitch muscles)

 

Blood, saliva and tissue samples are stored in hospitals, research

laboratories, testing facilities and forensic laboratories. Details are

stored in databases of various sizes for access and cross-referencing.

 

" 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. "

 

http://www.theaustralian.news.com.au/common/story_page/

0,5744,16567754%255E30417,00.html