Source: https://www.legislation.gov.au/Details/C2004B01814/Html/Text
Timestamp: 2020-07-13 22:02:18
Document Index: 600664351

Matched Legal Cases: ['art 2', 'art 3', 'art 4', 'art 5', 'art 7', 'art 8']

Genetic Privacy and Non-discrimination Bill 1998 [2004]
Details: C2004B01814
- C2004B01814
Part 2--Disclosure of genetic information to third persons
Part 3--Collection, storage and analysis of DNA samples
Part 4--Discrimination prohibited
Part 5--Research
Part 7--Privacy and discrimination complaints
Part 8--Other breaches and penalties
Schedule 1--Notice to accompany disclosures
(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
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.
(2)	The person to whom genetic information has been disclosed may redisclose the information only to the extent reasonable in the exercise of judgment for professional medical consultation for the direct benefit of a patient or with the written authorisation of the individual.
(5)	A general authorisation for the release of records or medical information is not to be construed as an authorisation for disclosure of genetic information. With respect to records that contain genetic
information, the requirements for disclosure of genetic information that are described in this section are to be fulfilled prior to disclosure of the information.
(a)	make the amendment requested; and
(a)	obtains the written authorisation of the individual in accordance with section 16; and
(b)	provides the information to the individual in accordance with section 15; and
(d)	collects the sample in accordance with the authorisation and notice of rights and assurances.
(a)	has the written authorisation of the individual and the notice of rights and assurances has been provided; and
(d)	that the individual may specify another person as the person authorised to make decisions regarding disposition of the DNA sample after the death of the individual and, if any person is so designated, that the individual should notify the facility in which the DNA sample is stored; and
(g)	that the collection, storage and analysis of the DNA sample and the genetic information characterised from the sample are protected by this Act, and that an individual whose rights under this Act are violated may seek redress as provided for in this Act; and
(1)	To be valid, the authorisation by an individual must
comply with each of the following:
(a)	terminate, restrict, limit, refuse to renew, or otherwise apply conditions to the coverage of an individual or family member under the policy or plan involved, or restrict the sale of the policy or plan to an individual or family member on the basis of any genetic information about a healthy individual or a healthy family member, or on the basis of a request for or receipt of genetic services by an individual or family member; or
(A)	provides a reasonable method for disclosing to the family members of a subject, the risks that are associated with genetic information of the subject that is generated by the research, and in reasonable medical judgment, can be effectively ameliorated, prevented or treated; and
(2)	For purposes of subparagraph (1)(c)(i), adequate safeguards against disclosure of genetic information, at a minimum, include:
(3)	If the DNA sample of a subject is collected, stored or analysed in connection with a research project, the researcher must ensure the destruction of the DNA sample on the date of completion of the project or withdrawal of the subject from the project, whichever occurs first, unless the researcher obtains a specific authorisation of the subject according to the provisions of this Act, to store the sample after such date.
(b)	the process for obtaining the authorisation of the subject must include information about:
(1)	Any person who stores genetic information of a subject may allow access to such information only with the written authorisation of the subject according to the provisions of this Act, and such information must be provided with individual identifiers, or codes, or no identifiers, according to the written authorisation of the subject.
(a)	the inspection or review is for the purpose of compiling data for statistical or epidemiological studies and genetic information that contains personal identifiers is not copied, removed from the records, or redisclosed in any way; and
(i)	that the limitations in paragraph (a) will be complied with; and
(2)	Except as provided by this Act, genetic information collected as part of a research project described in this section may be disclosed only with the authorisation of the individual involved or the individual's legal representative.
(2)	If, within a period of 3 months after notification pursuant to subsection (1), the person receives no response from the individual, the person:
(2)	Where a complaint has been made to the Privacy Commissioner under this section, Part V of the Privacy Act 1988 (except
for paragraph 41(3)(a) and subsections 41(4), 52(3A) and 63(1)) applies as if the complaint were a complaint under section 36 of that Act.
(1)	An individual may complain about an act or practice that may be genetic discrimination according to this Act by making a complaint to the Human Rights and Equal Opportunity Commission.
(4)	Any person who negligently collects, stores or analyses a DNA sample of an individual in breach of this Act, or negligently induces another person to conduct such collection, storage or analysis, is liable to the individual for each such breach in an amount equal to:
(a)	any actual damages sustained as a result of the collection, storage or analysis, or $50 000, or an amount determined by the court, whichever is greatest; and
(5)	Any person who wilfully collects, stores or analyses a DNA sample of an individual in breach of this Act, or wilfully induces another person to conduct such collection, storage or analysis, shall be liable to the individual for each such breach in an amount equal to:
(a)	any actual damages sustained as a result of the collection, storage or analysis, or $100,000, or an amount determined by the court, whichever is greatest; and