On 29 May 2003, in the Australian Parliament, the then Attorney General of Australia, the Hon Daryl Williams AM QC MP, and the then Minister for Health and Ageing, Senator the Hon Dr. Kay Patterson, launched the report Essentially Yours: The Protection of Human Genetic Information in Australia.1 The launch represented the culmination of a major, 2-year inquiry by the Australian Law Reform Commission (ALRC) and the Australian Health Ethics Committee (AHEC)—a principal committee of the National Health and Medical Research Council (NHMRC).
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Australian Law Reform Commission, 2003. Essentially Yours: The Protection of Human Genetic Information in Australia (ALRC 96).
Ibid., Part D.
Ibid., Part F.
Ibid., Part J.
Ibid., Part G—explored in further detail in the following chapter.
Ibid., Part H.
Ibid., Chapter 37.
Ibid., Part E.
Ibid., Chapter 35.
Ibid., Chapter 36.
Ibid., Chapter 38.
Australian Law Reform Commission, 2001. The Protection of Human Genetic Information. Issues Paper 26.
Australian Law Reform Commission, 2002. The Protection of Human Genetic Information. Discussion Paper 66.
ALRC 96, paragraph 3.41.
Ibid., paragraph 3.42. See Australian Law Reform Commission, 2001. The Protection of Human Genetic Information, Issues Paper 26, paragraphs 2.27–2.29 for a discussion of this Bill, and its consideration by a Senate committee. For the committee report, see Senate Legal and Constitutional Legislation Committee, 2002. Provisions of the Genetic Privacy and Nondiscrimination Bill 1998. The Parliament of Australia, available at <www.aph.gov.au/senate/ committee/legcon_ctte/genetic/index.htm>, cited 21 August 2002. The Bill was restored to the Senate Notice Paper on 14 May 2002.
Annas, G., Glantz, L., and Roche, R. 1995. Drafting the Genetic Privacy Act: science, policy and practical considerations. Journal of Law, Medicine and Ethics 23: 360, 365.
Ibid., 360.
See ALRC 96, especially paragraphs 3.64–3.77 on the ‘‘Dangers of genetic essentialism.’’
Such as the policy on genetic testing developed by the peak life insurance body, the Investment and Financial Services Association: see below.
ALRC 96, Chapter 5 and Recommendations 5-1–5-9.
Ibid., Chapter 12; see also discussion below.
Ibid., Part D, Chapters 13–17.
Ibid., Chapter 11.
Ibid., Chapter 23.
Ibid., Part H, Chapters 29–34.
Ibid., Chapter 35. In those cases in which agreement cannot be reached—e.g., because a mature child or a person with parental responsibility withholds consent or is unavailable—a court may authorize testing, after taking the child’s interests into account. In order to ensure high ethical standards and technical competence, DNA parentage testing should be conducted only by NATA-accredited laboratories, operating in accordance with the specific accreditation standards in this area. Information about the availability of genetic counselling should be provided to the parties.
Ibid., Part J, Chapters 39–46.
Ibid., Chapter 3 on ‘‘Is genetic information special?’’
Ibid., Chapter 3 on ‘‘Is genetic information truly exceptional?’’
The Privacy Commissioner has noted that these professional rules must be binding on the health service provider (i.e., the breach will give rise to adverse consequences) and must be established by a competent health or medical body, such as medical boards recognized in federal, state, or territory law.
Skene, L. 1998. Patients’ Rights or Family Responsibilities? Two Approaches to Genetic Testing. 13–14, unpublished, appended to Research Committee of the NHMRC, Submission 39 to Senate Legal and Constitutional Legislation Committee Inquiry into the Provisions of the Genetic Privacy and Non-discrimination Bill, 26 May 1998.
Cancer Genetics Ethics Committee, 1997. Ethics and Familial Cancers. Anti-Cancer Council of Victoria, Paragraph 10.18.
Ibid., Guideline 16.
Breen versus Williams (1996) 186 CLR 71.
NPP 6 provides some limited circumstances in which health providers may withhold genetic and other health information, including where providing access would: pose a serious threat to the life or health of any individual; have an unreasonable impact upon the privacy of other individuals; or be unlawful or prejudice various law enforcement interests.
Cancer Genetics Ethics Committee, 1997. Ethics and Familial Cancers. Anti-Cancer Council of Victoria, Guideline 13.
National Health and Medical Research Council, 1999. National Statement on Ethical Conduct in Research Involving Humans, Paragraphs 16.10 and 16.15–16.16.
Cancer Genetics Ethics Committee, Guideline 16. FAP refers to ‘‘familial adenomatous polyposis,’’ a form of inheritable colorectal cancer.
Privacy and Personal Information Protection Act 1998 (NSW).
Private Hospitals Regulations 1996 (NSW); Nursing Homes Regulation 1996 (NSW); Day Procedure Centres Regulation 1996 (NSW).
See, e.g., Health Administration Act 1982 (NSW); Health Services Act 1988 (Vic); South Australian Health Commission Act 1976 (SA).
Crosby, D. 2000. Protection of Genetic Information: An International Comparison. London: Human Genetics Commission.
Health Insurance Portability and Accountability Act 1996: Standards for the Privacy of Individually Identifiable Health Information 45 CFR Part 164, 1996 (USA).
Ibid., 78. The Dutch Personal Data Protection Act 2000 does make specific reference to genetic privacy.
ALRC 96, paragraph 7.63.
Ibid., paragraph 7.65.
Ibid., Recommendations 7-4 and 7-5.
Ibid., Recommendation 7-6.
Ibid., Recommendation 7-7.
Ibid., Recommendations 8-1 and 8-2.
Ibid., Recommendation 8-3.
Ibid., Recommendations 8-4 and 21-3.
Ibid., Recommendation 21-1.
Ibid., Recommendations 34-1 and 34-2.
Ibid., Recommendations 7-4 and [7-82].
Ibid., Recommendation 7-5.
The polymerase chain reaction method, which greatly amplifies DNA to enable analysis.
Ibid., paragraph 8.3.
Ibid., Recommendation 8-2.
Ibid., Recommendation 8-2.
Ibid., Recommendation 8-3.
Ibid., Recommendation 8-4.
Ibid., Recommendation 21-1, and see paragraph 21.88.
Ibid., Recommendation 21-3.
Ibid., Recommendation 21-4.
Ibid., Recommendation 7-6, and see paragraphs 7.84–7.91.
Ibid., Recommendation 34-1. Again, due to the Inquiry’s Terms of Reference, this recommendation applies only to genetic information contained in employee records. However, the Inquiry identified a number of concerns about other forms of personal health and medical information contained in employee records, and the report contains another recommendation urging that this issue be given further consideration in a broader context: Recommendation 34-2.
Including the House of Representatives Standing Committee on Legal and Constitutional Affairs and the Senate Legal and Constitutional Legislation Committee in their respective considerations of the Privacy Amendment (Private Sector) Bill 2000.
Dr. Francis Collins, Director of the National Human Genome Research Institute and Head of the Human Genome Project, has predicted that within 10 years, and perhaps within 5, a person will be able to provide a sample and soon afterwards collect a CD-Rom spelling out his/her full, 3.3 billion letter, genetic sequence.
See ALRC 96, Part H: Employment, especially Chapters 29–30.
Ibid., Chapter 34.
Smyth, T. 2002. Protecting human genetic information and its use. Health Law Bulletin 10 (6): 64, 66.
ALRC 96, Recommendation 7-7, and see paragraphs 7.99–7.104. The Office of the Federal Privacy Commissioner supported the removal of the exemption for small businesses holding health information, but was concerned that limiting the reform to ‘‘genetic information’’ would introduce ‘‘unnecessary complexity into the regulatory framework applying to small businesses.’’ The Inquiry was limited in the breadth of its recommendation by the Terms of Reference. However, if the definition of ‘‘health information’’ were amended specifically to include genetic information (as outlined above), this would achieve the underlying aims of the recommendation.
Each state and territory in Australia has its own anti-discrimination regime and each Act contains its own insurance exception; see: Discrimination Act 1991 (ACT) section 28; Anti- Discrimination Act 1992 (NT) section 49; Anti-Discrimination Act 1977 (NSW) section 49Q; Anti-Discrimination Act 1991 (Qld) sections 74, 75; Equal Opportunity Act 1984 (SA) section 85; Anti-discrimination Act 1998 (Tas) section 44; Equal Opportunity Act 1995 (Vic) section 43; Equal Opportunity Act 1984 (WA) section 66T.
The federal laws make reference to a wide range of international instruments, as well as ‘‘matters external to Australia’’ (in the case of the DDA and SDA) and ‘‘matters of international concern’’ (in relation to the DDA)—not least to help ground the exercise of federal power in this area in the Commonwealth’s responsibility for ‘‘external affairs’’ under section 51(xxix) of the Australian Constitution.
Universal Declaration on the Human Genome and Human Rights, UNESCO, available at <www.unesco.org/ibc/en/genome/projet/>.
Convention for the Protection of Human Rights and Dignity of the Human Being with Regard to the Application of Biology and Medicine (opened for signature 4 April 1997, ETS No 164; entered into force on 1 December 1999).
Discrimination on the ground of genetic status may, potentially, arise in many of these contexts. However, consistently with the emphasis in the Inquiry’s Terms of Reference, and with the level of concern expressed in submissions, ALRC 96 focused mainly on discrimination in employment and insurance.
See ALRC 96, paragraph 9.80.
Ibid., paragraph 9.81.
Ibid., quoting Anti-Discrimination Board of NSW, Submission G157, 1 May 2002.
Such as the Human Rights and Equal Opportunity Commission Act 1986 (Cth) and the Workplace Relations Act 1996 (Cth). The ALRC also made a parallel recommendation that the states and territories should consider harmonising their anti-discrimination legislation, and other relevant laws, in a manner consistent with the recommendations in the report: Recommendation 9.5.
ALRC 96, Recommendation 9-3.
Ibid., paragraph 9.50.
Ibid., paragraph 9.51.
Ibid., paragraph 9.55.
Ibid., Chapter 35.
Ibid., Recommendation 12-1; and see generally Chapter 12.
See, e.g., ALRC 96, paragraphs 4.12–4.17.
Fukuyama, F. 2002. Our Posthuman Future: Consequences of the Biotechnology Revolution. New York: Farrar Straus & Giroux.
Only 45% of Europeans agreed with the statement that their governments regulate biotechnology well enough, compared with 29% who disagree and 26% who are not sure: Eurobarometer 52.1, The Europeans and biotechnology, available at <www.europa.eu.int/comm/ research/quality-of-life/eurobarometer.html>, cited 19 February 2003.
ALRC 96, Recommendation 12-1.
See ALRC 96, especially paragraphs 3.64–3.77, on the ‘‘Dangers of genetic essentialism.’’
Quoted in ALRC Media Release, ALRC work praised at World Genetics Congress, available at <http://www.alrc.gov.au/media/2003/mr0714.htm>, cited 14 July 2003.
Ibid.
Ibid., see also similar remarks made in the Parliament, Hansard, 11 May 2005, available at <http://www.aph.gov.au/hansard/senate/dailys/ds110505.pdf>.
Lemmons, T. 2003. Why regulate the new genetics? Reform 83 (Spring): 41, 41–42.
Murray, T. 2003. Essentially yours: a review. Reform 83 (Spring): 47, 50.
This will require amendment of the National Health and Medical Research Council Act 1992 (Cth), to provide for the establishment, membership, and role of this new principal committee, which will join the Australian Health Ethics Committee, the Embryo Research Licensing Committee, and others.
ALRC 96, Recommendations 5-1–5-9.
Australian Government, Department of Health and Ageing, Leading Australia’s health into the future, available at <http://www.health.gov.au/internet/budget/publishing.nsf/Content/ health-budget2005-hbudget-hfact6.htm>, cited 10 May 2005.
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Weisbrot, D. (2006). The Imperative of the "New Genetics": Challenges for Ethics, Law, and Social Policy. In: Betta, M. (eds) The Moral, Social, and Commercial Imperatives of Genetic Testing and Screening. International Library of Ethics, Law, and the New Medicine, vol 30. Springer, Dordrecht. https://doi.org/10.1007/978-1-4020-4619-3_5
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