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
September 12, 2005
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.
[continues - see link]
