Genetic Gymnastics
August 2000 |
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What's
it about?
Looking for a job? How would you like to be asked some of the following questions as
part of the interview process: 'Do you ever lie?' 'Are you ambitious?' 'Do you sometimes
think it is important to challenge authority?' Each of these questions could be answered
in the negative or positive depending on the circumstances - and each response could be
'right' or 'wrong' depending on the parameters of the test and the requirements of the
job.
Bad enough? Watch out, because the testers have a lot more in
store for you!
The fruition of the Genome Project opens a Pandora's Box - genetic
testing to predict future problems an employer might strike with a disease prone employee;
a test to predict the likelihood that an insurance company will have to pay out on a
policy-holder's catastrophic illness; and once aware of a genetic 'defect', the obligation
a person would have to reveal to service providers the nature of the results. In the past
insurance companies have determined rates by reference to statistical averages - what a
boon it would be if they could impose heavy premiums on those with a genetic
predisposition to illness, leaving the healthy and shareholders to reap the benefits.
Enter the geneticist
A Genome is the complete text of a human's genetic material, about 100,000 genes, and
thus the Genome Project has allowed us a glimpse at the book of human life. For instance,
did you know that some patterns of genes may predispose you to depression and mental
illness? That there may be thousands of genes linked to numerous diseases?
Let's take an obvious legal dilemma that flows from the
completion of the Human Genome Project. Should parents be able to design their children?
Should they be able to abort foetuses that do not achieve a level of genetic perfection,
and if so, what are the standards? We routinely test for Downs Syndrome and spina bifida -
we agree that is fair. So what about the myriad of other conditions, some benign by many
parents' standards, that the Genome Project will allow to be tested? Should we avoid these
precautionary measures because it may lead to potential abuses?
What if an insurance company is aware that you have inherited a
disease that will, at some time in the future, lead to a debilitating condition? Let's
take the example of Huntingdon's Disease. A genetic test already exists that is highly
accurate, but the symptoms arrive at vastly different times and in varying degrees
according to the individual. Would it be fair for an employer to discriminate against a
worker based on that genetic test? Clearly most people would be horrified at the prospect
of denying a person a life that can be fulfilled to late adulthood.
How much of a leap is it to wonder when a woman will be able to
diagnose innumerable traits in her unborn child - genetic pre-natal testing may allow us
to identify a foetus with a predisposition to obesity or relatively short stature. This
raises the most obvious question for the development of the law - after decades of
hard-won battles to restrict racial, sexual or other discrimination, are we on the verge
of a new scourge, 'genetic discrimination'?
Genetic discrimination
The Genome Project raises an interesting legal conundrum. As Justice Michael Kirby has
commented in the past, at the heart of discrimination lies difference. And what lies at
the heart of the Genome Project? Clearly it maps the differences between us in minute
detail. Think about it. Most of the discriminations we are aware of are genetic in origin
- in the future we will also be able to predict these traits as potentialities as well as
facts.
It's not just discrimination that is back in the limelight. How much do you want your
doctor to know about you? Your common-sense response is as much as possible - but again,
what if the doctor, through genetic testing, become aware of a genetic flaw that is likely
to be passed on to an offspring? Should the doctor be permitted to inform a spouse against
your wishes? Should you retain the confidentiality of the doctor-patient relationship you
now enjoy?
If you are a parent, do you want the legal right to refuse a genetic test of your
child, or is it to the best interests of the community that all children be genetically
screened? From this writer's point of view, there are strong ethical reasons to allow
parents this right to protect their children from information that might prejudice their
future and result in enormous psychological damage. But, of course, the vast majority of
parents will avail themselves of genetic testing because it might allow a disease to be
diagnosed and treated prior to its onset. Given that, parents will rightly want the law to
protect their children from the discrimination that may result.
And finally, do you think your future spouse or partner should be entitled to access
your genetic profile prior to marriage, de facto commitment, or a decision to begin a
family. Sure, you might believe it is only fair that you have a clear picture of a future
with your partner, but is this discriminatory? Might it lead to a spate of suicides and
depression by forgone suitors relegated to the Darwinian dustbin?
Verdict
So we've learnt the language of our genetic makeup, but does that mean we've actually
learnt what it means to be human? There are salient lessons to be learnt from the spread
of totalitarianism and racism in the last century, when serious considerations were given
to the culling of socially unacceptable people, whether by race or disability. There will
be one clear consequence of untrammelled genetic testing - many people will deliberately
avoid them for fear of being burdened by a questionable result that may preclude them from
obtaining a job, insurance or even a life partner.
And how should the law react to the sensibilities of people with disabilities, who may
be marginalised because their disability is a genetic 'abnormality', or suffer the
denunciation of a cash-strapped society because their disability could have been diagnosed
before they were born?
This is clearly the province of anti-discrimination legislation. The UN Universal
Declaration on the Human Genome and Human Rights states:
"No one shall be subjected to discrimination based on genetic characteristics that
is intended to infringe or has the effect of infringing human rights, fundamental freedoms
and human dignity"
Admirable sentiments, but it's up to ordinary citizens to ensure that the law gets a
grip on the scientific breakthroughs on our doorstep. This is not something we want to
leave for the boffins, bioethicists or politicians - it affects us all. The law is
notoriously poor at keeping pace with the ethical dilemmas of a scientific age. Our best
defence is our own sense of decency and the terrible lessons of history.
Read this: The legal information contained above is
intended to be general information about the law. It is not a substitute for legal and
other professional advice. Lawscape Communications P/L does not accept responsibility for
loss to any person, who either acts or does not act because of this information.
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