HD Australia

Gene testing exposes us all to discrimination         

http://www.smh.com.au/opinion/editorial ... -o2ta.html


      February 16, 2010  
               
ITIS 10 years since the human genome was mapped. Genetic testing is bigbusiness. However, by 2000, most European countries and American stateshad enacted laws on the use of such tests for employment and insurancepurposes. At the time, The Age warned that Australians lackedprivacy protection and faced economic and social assessments of theirgenetic ''stamp''. Despite some legal changes since then, people remainvulnerable to invasive and discriminatory practices.
     
Theissue has been revived by a trial offer of half-price genetic testsmade to customers with NIB health cover. Testing would assess theirgenetic risks of illnesses such as diabetes, cancers and cardiovasculardisease. NIB chief executive Mark Fitzgibbon says in a letter that histest was an ''invaluable experience''. Only the small print discloses adownside (aside from the shock of unwanted findings): ''You may berequired to disclose genetic test results, including any underlyinghealth risks and conditions which the tests reveal, to life insuranceor superannuation providers.'' That includes NIB, which also sells lifeinsurance.
     
While people might regard DNAinformation as profoundly personal, they can be forced to reveal testresults to obtain life, income protection or mortgage insurance andeven some superannuation products. If tests indicate a higher risk, aperson may be charged more, offered a shorter period or more limitedform of cover, or refused cover (but health insurance premiums cannotbe adjusted for individual risk). If a customer conceals a test, theinsurer may refuse to pay out. A member of the federal government'sHuman Genetics Advisory Committee, Kristine Barlow-Stewart, studiesgenetic discrimination in Australia. In one study she found 48 cases,of which 46 people reported adverse treatment by insurers on the basisof genetic tests.
     
It is wrong, biologically andphilosophically, to treat a person as if they are no more than the sumof their DNA, as if it is ''all in the genes''. Geneticists say it isnot so simple; a person's genes and environment interact in complexways. Yet, as early as 2000, job and loan applicants were asked to havegenetic tests, with refusal counting against them.
     
Thepotential health benefits of DNA science are great. For instance,individuals from families with a history of bowel cancer can improvesurvival rates through early detection by 50 per cent. However, aMelbourne University study last year found that when told aboutinsurance implications, the number declining testing leapt from 20 percent to 50 per cent. That is the damaging health impact of laws thatenable insurers and employers to use results of genetic testing againstpeople. Last year, the Disability Discrimination Act was amended tocover genetic predispositions to disability, but the definition of adisability is far narrower than the range of genetic conditions thatexpose people to discrimination.
     
This is much more than an issue of medical risk and insurance. As The Agestated in 2005: ''We all hold information in our DNA that would be ofinterest to insurers, employers, police, doctors and researchers. Thatdoes not mean they have a right to it.'' No one should feel pressure toundergo DNA tests when the benefits are offset by often poorlydisclosed financial risks and invasions of privacy.
     
Thepower of DNA testing invites abuse, and individuals have limitedrecourse against this. The march of science and markets has outpacedlegal and ethical frameworks meant to protect us. Australians holdwell-founded fears that DNA test results can be used against them.
     
Ultimately,the problem is that the privacy most people rightly believe should besafeguarded against corporate or government intrusion has noconstitutional protection. The solution might be a bill of rights.Unfortunately, progress in that area has been even slower thangovernment action to uphold individuals' rights to their geneticinformation.