Chapter 1
BACKGROUND
Referral of the bill
1.1 On Wednesday, 11 March 1998, the Deputy Leader of the Australian
Democrats, Senator Natasha Stott Despoja, introduced the Genetic Privacy
and Non-discrimination Bill 1998 into the Senate. The bill was subsequently
referred to the Senate Legal and Constitutional Legislation Committee
on 25 March 1998, for inquiry and report by 11 August 1998.
1.2 An interim report was presented to the President of the Senate on
10 August 1998. Before the final report of the committee could be tabled,
the 1998 Federal election was called and the committee was unable to continue
its consideration of the 1998 bill. The bill subsequently lapsed from
the Senate Notice Paper prior to the commencement of the 39th Parliament.
1.3 After the election, the provisions of the 1998 bill (that is, as
introduced in the 38th Parliament) were referred to the newly constituted
committee on 23 November 1998, for report by the last day of sitting of
1998. The reference also provided for the committee to consider and use
the records of its predecessor committee appointed in the 38th Parliament.
The bill itself was restored to the Senate Notice Paper on 23 November
1998 also. The committee subsequently obtained several extensions of time
to report, to 31 March 1999.
Background
1.4 The bill is based on the model genetic privacy act of George Annas,
Leonard Glantz and Patricia Roche of Boston University School of Public
Health, and the proposed Genetic Confidentiality and Non-discrimination
Act 1997 sponsored by US Senators Pete Domenici, Christopher Dodd
and James Jeffords and introduced into the US Congress on 11 March 1997.
1.5 This chapter briefly outlines the contents of the bill and the history
of this inquiry.
Genetic Privacy and Non-discrimination Bill 1998
1.6 The primary purposes of the bill are to:
- establish an enforceable right to privacy of genetic information of
an individual, by proscribing disclosure of such genetic information
except with the authorisation of the individual, or in other limited
circumstances;
- prevent any person from collecting a DNA sample from an individual
for genetic analysis, or storing, or conducting a genetic analysis of
such sample, except with the authorisation of the individual; and
- make discrimination based on genetic information unlawful.
Scope of the inquiry
1.7 The referral of the bill was initiated to enable further investigation
of the employment and insurance components of the bill with respect to
discrimination and the broader policy issues involved. [1]
Conduct of the inquiry
1.8 The Chair of the then committee wrote to the Human Rights Commissioner
and the Privacy Commissioner, relevant government departments and authorities,
bioethical and medical organisations, research institutes, universities,
support organisations, civil liberties' organisations, law societies and
bar associations, insurance companies and associations, and individuals
inviting submissions on the bill. The committee received submissions from
44 persons and organisations listed in Appendix 1.
1.9 The then committee decided to not hold public hearings on the inquiry
and the new committee affirmed this decision.
Evidence on the bill
1.10 The submissions on the bill focused on the issues of privacy and
discrimination in the areas of health care, medical research, employment,
insurance and forensic investigations. The genetic privacy issues raised
concerned the availability of personal information, the control of the
collection such information and access to it. The primary genetic discrimination
issue raised was the use of such information.
Footnotes
[1] Selection of Bills Committee, Report No.
3 of 1998.