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Genetic Privacy and Non-discrimination Bill 1998 [2008]

Part 1 P reliminary

   

1   Short title

                   This Act may be cited as the Genetic Privacy and Non-discrimination Act 1998 .

2   Commencement

                   This Act commences on a day to be fixed by Proclamation.

3   Saving of certain State and Territory laws

                   It is the intention of the Parliament that this Act is not to affect the operation of a law of a State or of a Territory that is capable of operating concurrently with this Act.

4   Act to bind the Crown

             (1)  This Act binds the Crown in right of the Commonwealth, of each of the States, of the Australian Capital Territory, of the Northern Territory and of Norfolk Island.

             (2) This Act does not make the Crown liable to be prosecuted for an offence.

5   Extension to external Territories

                   This Act extends to every external Territory.

6   Objects of Act

                   The objects of this Act are:

                     (a)  to define the circumstances under which:

                              (i)  genetic information may be collected, stored, analysed and disclosed; and

                             (ii)  DNA samples may be collected, stored and analysed; and

                     (b)  to define the rights of individuals and persons with respect to genetic information; and

                     (c)  to define the responsibilities of persons with respect to genetic information; and

                     (d)  to protect individuals and families from genetic discrimination; and

                     (e)  to establish uniform rules that protect individual genetic privacy; and

                      (f)  to establish effective mechanisms to enforce the rights and responsibilities established under this Act.

7   Interpretation

                   In this Act, unless the contrary intention appears:

collect means to obtain a DNA sample.

Convention means any international agreement to which Australia is a party or has signified agreement.

disclose , when used with respect to the genetic information of an individual, means to convey, or provide access to, the genetic information to a person other than the individual.

DNA means deoxyribonucleic acid, which is a genetic material that is composed of nucleotides, that encode genetic information.

DNA sample includes:

                     (a)  a human tissue sample from which DNA is intended to be extracted; or

                     (b)  DNA extracted from such tissue sample and other molecules (such as ribonucleic acids and polypeptides) from which DNA may be derived;

but does not include a tissue sample that is taken:

                     (c)  as a biopsy or an autopsy specimen, or as a clinical specimen solely for the purpose of conducting an immediate clinical or diagnostic test that is not a DNA test; or

                     (d)  as a blood sample solely for the purpose of storage in and distribution by a blood bank.

family means the biological and legal relatives of an individual who may have a material interest in the genetic information of the individual.

genetic analysis means the process of characterising genetic information from a DNA sample.

genetic information means:

                     (a)  information from a DNA sample about genotype; or

                     (b)  information from mutation analysis; or

                     (c)  information about nucleotide and polypeptide sequence(s); or

                     (d)  information about gene(s) or gene products.

genetic record means information (including information forming part of a database), whether compiled lawfully or unlawfully, and whether recorded in a material form or not, that records genetic information of an individual in a manner connecting it with the person’s identity.

genetic services means any service providing genetic analysis.

individual means the source of a human tissue sample from which DNA is extracted or genetic information is characterised. The term includes a subject of genetic research and, where appropriate, includes the parent, guardian or legal representative of the individual.

individual identifier means any information by which the identity of the individual can be ascertained, but does not include codes that cannot be used singly to identify an individual.

insurer means an insurer within the meaning of paragraph 51(xiv) of the Constitution.

person includes a family, corporation, partnership, association, joint venture, a body (whether incorporated or not) established for a public purpose by or under a law of the Commonwealth, and any other legal or commercial entity. The term person , used with respect to a human tissue sample, does not include the individual who is the source of the tissue sample.

research means scientific investigation that includes systematic development and testing of hypotheses for the purpose of increasing knowledge.

researcher means a person who conducts research.

retain means to store a DNA sample or genetic information characterised from such a sample for an extended period of time after the initial genetic analysis.

subject , when used with respect to genetic research, means the source of a human tissue sample collected for genetic analysis.