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genetic
privacy
This page considers genetic privacy in Australia.
It covers -
introduction
As
the broader discussion of genetic privacy elsewhere
on this site indicates, genetic information is of increasing
significance for law enforcement, insurance, employment
and a range of other purposes. It has been reflected in
establishment of major research and forensic databases,
for example the national DNA database discussed here.
legal frameworks
In September 2006 the federal Attorney-General announced
that human genetic information would be protected under
the federal Privacy Act 1988, following passage
of the Privacy Legislation Amendment Bill 2006.
That legislation implements selected recommendations of
the Australian Law Reform Commission's 2003 Essentially
Yours: The Protection of Human Genetic Information
report.
That report's key recommendations included -
- establishment
of a standing Human Genetics Commission of Australia
(HGCA) to provide high-level, technical and strategic
advice about current and emerging issues in human genetics,
as well as providing a consultative mechanism for the
development of policy statements and national guidelines
in this area.
-
amendment of discrimination laws to clearly prohibit
unlawful discrimination based on a person's real or
perceived genetic status.
-
harmonisation of privacy laws to address the particular
challenges of human genetic information, something that
requires extension of privacy protection to genetic
samples and acknowledgment of "the familial dimension
of genetic information" (doctors for example should
be authorised to disclose personal genetic information
to a genetic relative in circumstances where disclosure
is necessary to lessen or prevent a serious threat to
an individual's life, health, or safety).
-
creation of a new criminal offence to prohibit an individual
or a corporation from submitting another person's sample
for genetic testing, or conducting such testing, knowing
(or recklessly indifferent to the fact) that this is
done without the consent of the person concerned or
other lawful authority.
-
strengthening of ethical oversight of genetic research
to ensure all genetic research complies with NHMRC standards,
better support of Human Research Ethics Committees (HRECs),
more guidance to researchers and research participants
about best practice, new rules to govern operation of
human genetic research databases, tighter reporting
requirements and enhanced powers for the Therapeutic
Goods Administration (TGA) regarding genetic testing
devices that may be provided directly to the public.
-
development of safeguards regarding insurance industry
use of genetic information for underwriting purposes
and DNA parentage testing.
-
development of national minimum standards with respect
to the collection, use, storage, destruction and index
matching of forensic material (and the DNA profiles
created from such material). No inter-jurisdictional
sharing of information should be permitted except in
accordance with these national minimum standards.
The
A-G commented that "It is important that genetic information
is given the same protection as other sensitive information.
Such information will now be considered 'health information'
or 'sensitive information' for the purposes of the Privacy
Act".
paternity testing
The ALRC recommended that DNA
parentage testing involving children of 12-18 years who
are sufficiently mature to make a free and informed decision
should be permitted only with the consent of the child
or pursuant to a court order. Testing involving children
under 12 should be allowed only with the written consent
of both parents or pursuant to a court order, with the
expectation that an order would be granted where there
was a reasonable suggestion that paternity was in doubt.
The Family Law Amendment Act 2005 (Cth) enables
people who, through use of DNA testing, have found they
are not the parent of a child, to recover child maintenance
payments or property transferred under the Family Law
Act 1975. Magill
v Magill [2005] VSCA 51 dealt with issues regarding
'paternity fraud'.
For paternity testing see the ALRC report noted above,
Michael Gilding's 2004 discussion in 'DNA Paternity Testing
Without The Consent of the Mother: New technology, new
choices, new debates' (PDF)
or 'Rampant Misattributed Paternity: The Creation of an
Urban Myth' in 13(2) People and Place (2005)
1-11 and 'DNA paternity testing: Public perceptions and
the influence of gender' by Lyn Turney, Michael Gilding,
Christine Critchley, Penelope Shields, Lisa Bakacs &
Kerrie-Anne Butler in 1 Australian Journal of Emerging
Technologies and Society 1 (PDF).
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