Chapter 2
GENETIC PRIVACY AND NON-DISCRIMINATION BILL 1998
Introduction
2.1 The principal areas covered by the provisions of the bill are:
- disclosure of genetic information to third persons;
- collection, storage and analysis of DNA samples;
- prohibition of genetic discrimination; and
- use of genetic information for research.
These areas are discussed below. The bill also includes provisions concerning:
complaints in regard to privacy or discrimination issues; penalties and
damages for breaches; transfer of control of samples or records; and ownership
of genetic information concerning an unborn child.
Disclosure of genetic information to third persons
2.2 The bill provides that genetic information about an individual may
be disclosed only if the disclosure is:
- authorised by the individual;
- required by law;
or if a person believes on reasonable grounds that disclosure is necessary
to prevent or lessen a serious and imminent threat to the life or health
of an individual.
2.3 The bill sets out the detailed criteria for valid authorisation,
inspection, copying or amendment of genetic records.
Collection, storage and analysis of DNA samples
2.4 The bill also details the procedures required for the collection,
storage and analysis of DNA samples, except where other legislation provides
otherwise. These procedures include the provision of a notice of rights
and assurances to the individual; the information to be provided to an
individual prior to collection of samples; and the criteria for valid
authorisation by the individual allowing the collection, storage or analysis.
Prohibition of genetic discrimination
2.5 Part 4 of the bill prohibits discrimination against individuals on
the basis of genetic differences, with the following limited exceptions.
- employers may request or require a genetic test, or have access to
existing genetic information, for the limited purpose of ensuring that
a genetically susceptible employee avoids exposure to particular occupational
hazards; and
- insurers may have access to, and use of, the results of genetic tests
already undertaken, however, they are prohibited from requiring any
further genetic tests.
Use of genetic information for research
2.6 Under Part 5 of the bill, a researcher may only use DNA samples where
certain criteria have been satisfied, including having adequate safeguards
against disclosure of genetic information and having procedures for the
destruction of individual identifiers at the earliest opportunity. In
addition, DNA samples must be destroyed at the completion of research
unless specific authorisation is obtained to store the sample for longer.
2.7 If genetic analysis includes analysis of the family group of the
individual, genotype records must be stored in strict confidentiality
and disclosure must be in accordance with the [proposed] Act. The process
for authorisation of disclosure of such genetic information must include
information about the possibility that:
- family members may learn genetic information about the individual;
- the project may determine some family members are not genetic relatives.
The authorisation must also disclose how research records will be stored
during the project.
2.8 There are also provisions dealing with access to collections of genetic
information, including collections created before the commencement of
the bill.