The Use of Legal Remedies in Australia for Pursuing Allegations of Genetic Discrimination: Findings of an Empirical Study
| Published date | 01 September 2007 |
| Date | 01 September 2007 |
| DOI | 10.1177/135822910700900102 |
International Journal
of
Discrimination
and
the Law,
2007,
Vol.
9,
pp. 3-35
1358-2291/2007
$10
©
2007
A B Academic Publishers. Printed in Great Britain
THE USE OF LEGAL REMEDIES IN AUSTRALIA FOR
PURSUING ALLEGATIONS OF GENETIC
DISCRIMINATION: FINDINGS OF AN EMPIRICAL STUDY
MARGARET OTLOWSKI1 PhD, SANDRA TA YLOR2 PhD, KRISTINE BARLOW-
STEWART3 PhD,
MARK
STRANGER1 PhD and SUSAN TRELOAR4 PhD
1 Centre for Law and Genetics, School
of
Law, University
of
Tasmania, Hobart, Australia
2
Department
of
Social Work and Human Services, Central Queensland University,
Rockhampton, Australia
3Centre for Genetics Education, Royal North Shore Hospital, Sydney, Australia
4Queensland Institute
of
Medical Research, Brisbane, Australia
ABSTRACT
Differential treatment
on
the basis
of
genetic status (genetic discrimination), has
become
an
issue
of
international concern. The Genetic Discrimination Project
(GDP)
is
an
Australia-wide study which has empirically examined the non-
medical/health advantages
and
disadvantages for individuals who have gained
specific information
about
their genetic status (typically through genetic testing).
A major component
of
this project has been the Legal System Study which inves-
tigated
and
documented all cases involving allegations
of
genetic discrimination
coming before anti-discrimination tribunals
and
other relevant bodies in Australia.
Another major component
of
the project, the Consumer Study, investigated alle-
gations
of
genetic discrimination from consumers
of
genetic tests. While the
study identified a relatively small number
of
cases where allegations
of
genetic dis-
crimination have been pursued under Australian anti-discrimination legislation, a
key finding was the notable lack
of
uptake
of
legal remedies by those who may have
experienced such discrimination. This paper explores possible factors contributing
to this lack
of
uptake
and
makes recommendations to facilitate access to legal
remedies by those who may have been subject to unlawful genetic discrimination.
INTRODUCTION
The
rapid
developments in
the
science
and
technology
of
predictive
and
pre-symptomatic
genetic testing, in
the
wake
of
the
mapping
of
the
human
genome
through
the
Human
Genome
Project
(Collins
et
a!.
2003), have led
to
increasing
community
awareness
of
the
potential
for 'genetic discrimination' (Billings
et
al. 1992); i.e. differ-
ential
treatment
of
asymptomatic
individuals
or
their relatives
on
the
basis
of
actual
or
presumed
genetic differences. A significant feature
of
such
discrimination is
that
it
is directed against
an
asymptomatic
4
person
on
the basis
of
their genetic risk status, as distinct
from
a
manifest condition.
Although
this terminology
of
'genetic discrimi-
nation'
is itself neutral, potentially encompassing
both
positive
and
negative discrimination,
in
practice, fears have
naturally
focused
on
the risk
of
adverse
treatment
on
grounds
of
genetic
makeup
through,
for
example, denial
of
access
to
services. Following
reported
instances
of
genetic discrimination across a
number
of
jurisdictions, concerns
about
this newly emerging
phenomenon
have been highlighted
by
key inquiries
in
the
United
Kingdom
(Nuffield Council
on
Bioethics 1993;
House
of
Commons,
Science
and
Technology
Committee
1995;
Human
Genetics Advisory
Commission
1997, 1999;
Human
Genetics Commission 2002), the
United
States
(Lanman
2005),
Canada
(Privacy Commissioner
of
Canada,
1992; Provincial Advisory
Committee
on
New
Genetic
Technologies 2001; Province
of
Ontario
2002)
as
well as
in
Australia
(Australian
Law
Reform
Commission
and
the
Australian
Health
Ethics
Committee
(ALRC/
AHEC),
2003),
and
the
ensuing
reports
have recognised
that
measures need
to
be
put
in
place
to
minimize
this risk
if
the
full benefits
of
the
'new
genetics'
are
to
be realized.
The
international
dimensions
and
significance
of
this issue have
been
made
clear
through
explicit statements
in
a
number
of
key inter-
national
instruments,
that
States
must
take
steps
to
prohibit
genetic
discrimination.
In
particular,
Article 6
of
the
UNESCO
Universal
Declaration on the
Human
Genome
and
Human
Rights
(1997)
pro-
vides
that
'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
dig-
nity'. Article 7
of
the
UNESCO
International Declaration on
Human
Data
also deals with non-discrimination
and
non-stigmatisa-
tion
and
states
that
'Every
effort
should
be
made
to
ensure
that
human
genetic
data
are
not
used
for
purposes
that
are
discriminatory
or
in
any
way
that
would
lead
to
the stigmatization
of
an
individual,
a family
or
a
group'
.1 Whilst these
instruments
do
not
have binding
force, they
are
significant as normative statements.
The
focus
of
this
paper
is
on
the use
of
the
Australian
legal
system as
an
avenue
for
pursuing
complaints
of
genetic discrimina-
tion.
In
particular,
it
reports
on
empirical research
undertaken
nationally,
to
systematically investigate the use
made
of
existing
legal remedies
to
redress alleged discrimination
on
the
basis
of
genetic status.
2 This Legal System
Study
was a sub-project
of
a
larger
national
study
of
genetic discrimination
in
Australia
(the
'Genetic
Discrimination
Project' -
GDP)
(Otlowski
et
al. 2002;
Taylor
et
al. 2004;
Treloar
et
al. 2004),3
funded
by
the
Australian
Research Council
to
explore the
nature
and
extent
of
genetic
discrimination within the legal
and
social context. This project also
5
encompasses studies
of
the
experiences
and
perspectives
of
consu-
mers
through
the
Consumer
Survey
with
respect
to
genetic discrimi-
nation
of
a
targeted
group
of
individuals, as well as specific incidents
of
alleged negative
treatment
on
the
basis
of
their
genetic
character-
istics
(Taylor
et
al. 2007(a); 2007(b)). These consumers, while
having
family
history
or
genetic test
information
regarding
a
particular
genetic
condition,
were
asymptomatic
of
the
condition
at
the
time
of
the
alleged negative
treatment,
an
important
criterion
associated
with
potential
genetic discrimination as
noted
above.
The
practices
and
attitudes
of
third
parties
in
relation
to
the
use
of
genetic
informa-
tion,
in
particular
insurers (Otlowski
et
al. 2007)
and
employers were
also separately investigated.4
Further,
there is a verification
compo-
nent
of
the
study,
with
analysis
of
relevant
documentation
and
con-
tact
with
the
third
party
as
appropriate,
to
determine
whether
the
allegation
of
genetic discrimination
can
be
objectively established.
Exploring
the
different dimensions
of
the
phenomenon
of
genetic
discrimination
through
separate
investigation
of
the
major
stake-
holders
and
institutions
is a key feature
of
the
GDP.
By virtue
of
this
triangulated
design, the findings
from
the
various
sub-projects
can
be
analysed
with
the
benefit
of
a
broader
and
more
informed
perspective
based
on
the
study's
findings as a whole. This,
in
turn,
facilitates a
more
objective, evidence-based
approach
to
analysis
and
helps
to
ensure
that
conclusions
drawn
from
the
findings
of
the
various
subprojects
are
meaningful
in
the
wider context.
NATURE
AND
AIMS
OF
THE
LEGAL
SYSTEM
STUDY
The
Legal System
Study
had
the
overall objective
of
identifying all
cases
undertaken
to
date
within
the
Australian
legal system
(whether
to
final
determination
or
not)
involving allegations
by
individuals
of
genetic discrimination.
Further,
it
aimed
to
document
these cases
to
establish their
nature
and
circumstances
and
the
context
in
which
they
occurred,
their
outcomes,
and
the
features
of
the
legal
mechan-
isms
and
channels
through
which these cases were
pursued
and
where
relevant, determined. Systematic investigation
of
what
is
happening
in
practice within
the
Australian
legal system
and
the
extent
to
which
available legal avenues
are
being
used
takes
on
particular
importance
in
the
light
of
reported
allegations
of
genetic discrimination docu-
mented
in
the
other
GDP
subprojects
mentioned
above.
This Legal System
Study
sought
to
test the hypothesis, based
on
anecdotal information,
that
very few such cases are being litigated, not-
withstanding increased reporting
of
instances
of
genetic discrimination
in
Australia.
The
earlier study
by
Barlow-Stewart
and
Keays (Barlow-
Stewart
and
Keays 2001) identified 48 cases
of
alleged genetic
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