Ownership of human genetic samples

20.6 Reform of property law could provide individuals with the means to better protect the privacy of their genetic information. The exercise of information privacy rights and any property rights that may exist in human genetic samples need not conflict, in the same way that the right of access to medical records does not conflict with a medical practitioner’s ownership of those records. The Privacy Act provides a legally enforceable right for patients to obtain access to their medical records held by private medical practitioners, notwithstanding that the records are the property of the medical practitioners who create and maintain them.[1]

20.7 The idea of recognising property rights in human tissue, which includes the genetic material that may be extracted from almost all human cells, is not new. In the United States, property rights have been suggested as a possible means of protecting the privacy of genetic samples and information. For example, s 104(a) of the model Genetic Privacy Act (GPA) provides that ‘an individually identifiable DNA sample is the property of the sample source’.[2] Patricia Roche, George Annas and Leonard Glantz, the authors of the GPA, explain that:

By establishing an individually identifiable sample as the property of the sample source, the GPA serves not only the interest of those who would want to maintain exclusive control over their DNA, but also enables those who desire to share or transfer such control to do so. This ability is particularly important to individuals who are concerned with preserving their own samples for the future use and benefit of relatives and descendants … Owning one’s own DNA sample allows transfer of control in accordance with property law principles.[3]

20.8 A version of the GPA, the Genetic Confidentiality and Nondiscrimination Act was introduced into the United States Congress in 1996. However, although it identified a DNA sample as property, it did not assign ownership of that property to anyone.[4] A number of US states have enacted legislation similar to, or influenced by, the GPA.[5]

20.9 In 1995, Oregon became the first State in the United States to grant ownership rights in genetic samples to the individual from whom they were obtained, and to that person’s children.[6] However, the Oregon law was amended in 2001 to specify that genetic samples were not property, but that both genetic samples and information were private and must be protected.[7] The amendments were made after the property approach was criticised as a disincentive to research—an argument that was also put to the Inquiry in the submissions and is discussed later in this chapter.[8]

20.10 At present, Australian legislation does not address the property status of genetic samples. Instead, the legal status of genetic samples is governed by the common law. However, the common law position on property rights in human tissue samples is not well developed, and there is no clear judicial statement on the issue. Reform of property law in this context is therefore difficult to achieve, particularly as the direction in which the common law develops cannot be dictated.

[1] Compare Breen v Williams (1996) 186 CLR 71, which held that there was no general right of patient access to medical records at common law or in equity.

[2] P Roche, L Glantz and G Annas, ‘The Genetic Privacy Act: A Proposal for National Legislation’ (1996) 31(1) Jurimetrics 1. In Australia, this would be known as a model Bill, since it has not passed through the legislative process.

[3] G Annas, L Glantz and P Roche, ‘Drafting the Genetic Privacy Act: Science, Policy and Practical Considerations’ (1995) 23 Journal of Law, Medicine and Ethics 360, 363.

[4] No action was taken on the Act and a revised edition was introduced the following year: M Baram, ‘The Laws of Genetics’ (1997) 105 Environmental Health Perspectives 488.

[5] P R Reilly, State Show Keen Interest in Genetic Privacy, Gene Letter, <www.genesage.com/
professionals/geneletter/privacybills.html>, 7 February 2003.

[6]Oregon Genetic Privacy Act 1995 (US) § 4(1).

[7] The provision was altered by §15 of Senate Bill 114 of 2001. Attempts were made to remove the property provision in 1999 through Senate Bill 937, but these measures failed. See also P Wentz, Royal Flush, Williamette Week, <www.wweek.com/html/leada033199.html>, 6 February 2003; A Onion, Should You Own Your Own Genes?, ABC News (USA), <abcnews.go.com/sections/scitech/DailyNews/geneprivacy
010508.html>, 10 May 2001; Institute for Health Freedom, Who Owns Your Genetic Information?, <forhealthfreedom.org/Publications/Informed/WhoOwns.html>, 3 April 2001. The State of Georgia passed similar provisions, which have also subsequently been repealed.

[8] N Zeps, Submission G047, 14 January 2002; Australian Academy of Science, Submission G097, 21 January 2002; Life Sciences Network, Submission G129, 19 March 2002.