Is genetic information truly ‘exceptional’?

Competing philosophies

3.41 The literature about public policy making in respect of genetic information, especially in the United States, has tended to feature two polarised schools of thought. Those who favour ‘genetic exceptionalism’ view genetic information as uniquely powerful and posing special threats to privacy and discrimination that mandate dedicated and higher levels of legal protection. By way of contrast, the ‘genetic inclusivists’ argue that genetic information is just one of a number of sources of personal health and medical information, and there is no need for any higher or special protections.

3.42 Professors Annas, Glantz and Roche of the Boston University School of Public Health, the authors of the influential US Model Genetic Privacy Act,[33] have been the main proponents of genetic exceptionalism.

To the extent that we accord special status to our genes and what they reveal, genetic information is uniquely powerful and uniquely personal, and thus merits unique privacy protection.[34]

3.43 Annas, Glantz and Roche offer three justifications for this view, along the lines discussed above. First, a person’s DNA ‘can predict an individual’s likely medical future for a variety of conditions’. Indeed, they argue that one’s DNA is a

[c]oded probabilistic future diary because it describes an important part of a person’s unique future and, as such, can affect and undermine an individual’s view of his/her life’s possibilities. Unlike ordinary diaries that are created by the writer, the information contained in one’s DNA, which is stable and can be stored for long periods of time, is in code and is largely unknown to the person. Most of the code cannot now be broken, but parts are being deciphered almost daily.[35]

3.44 Second, genetic information about an individual also ‘divulges personal information about one’s parents, siblings, and children’.[36] Third, there is a legitimate concern about the possibility of genetic discrimination, since there is a history of genetics being used to stigmatise and victimise.

3.45 However, there also are strong arguments that genetic information is not fundamentally different from other sorts of health and medical information, and therefore does not invariably merit special treatment. Dr Thomas Murray[37] has suggested that much of the drive behind genetic exceptionalism is based upon a generalised image of genetic information as ‘a mysterious, powerful and inexorable force that will dominate and control our futures’.[38]

3.46 Another leading American expert in this area, Professor Lawrence Gostin,[39] once argued that there are ‘compelling justifications’ for special privacy protection for genetic information, grounded in

the sheer breadth of information discoverable; the potential to unlock secrets that are currently unknown about the person; the unique quality of the information enabling certain identification of the individual; the stability of DNA rendering distant future applications possible; and the generalizability of the data to families, genetically related communities, and ethnic and racial populations.[40]

3.47 However, Gostin has since come to the conclusion that:

Genetic exceptionalism is flawed for two reasons: (1) strict protections of autonomy, privacy and equal treatment of persons with genetic conditions threaten the accomplishment of public goods; and (2) there is no clear demarcation separating genetic data from other health data; other health data deserve protections in a national health information infrastructure.[41]

3.48 On this view, genetic information is neither distinctive nor unique in its ability to predict an individual’s future health, but indicates only a rough range of probabilities. Information about lifestyle (smoker or non-smoker, skydiver or racing car driver, miner or office worker) and non-genetic test results (for example, for hepatitis or HIV/AIDS) also provide important clues to present and future health. Murray notes that many other factors and forms of health information ‘afford equally interesting predictions’ and ‘have implications for future health that are every bit as cogent and sensitive as genetic predispositions’.[42]

3.49 Similarly, other non-genetic test results will contain very sensitive personal information, with the potential to cause distress, discrimination and stigma—such as a positive result for HIV/AIDS, tuberculosis, Hepatitis or a sexually transmitted disease. Murray notes:

Again, genetics is not alone. Institutions and individuals can and have used all sorts of information, both visible and occult, as the basis for discrimination. … Perhaps what really frightens and galls us about discrimination on the basis of genetic information is its reliance on information about us over which we have no control and may not even know ourselves. Here again it is the hidden and mysterious nature of genetic information, joined with its aura of power and ubiquity, lurking close beneath the surface of our discomfort.[43]

3.50 Acceptance of genetic exceptionalism, Murray argues, would in practice require health systems to adopt a ‘two bucket theory of disease’, categorising and tossing every disease and risk factor into either the ‘genetic’ or the ‘non-genetic’ bucket—whereas ‘many diseases and risks don’t fit neatly into either bucket’.[44]

3.51 In rejecting genetic exceptionalism, Murray writes that his Task Force on genetics and insurance ultimately concluded:

There was no good moral justification for treating genetic information, genetic diseases, or genetic risk factors as categorically different from other medical information, diseases or risk factors. … Our need for health care in most cases will be the product of a complex mix of factors, genetic and non-genetic, both within the scope of our responsibility and outside of that scope. The distinction between genetic and non-genetic factors is not the crucial one.[45]

3.52 As a general matter, consultations and submissions to this Inquiry supported this view. The Commonwealth Department of Health and Ageing understood genetic information as part of a continuum of personal and health information, which would be difficult to ‘quarantine’ and subject to a different set of rules in the health sector.[46]

3.53 Similarly, health law expert Dr Roger Magnusson submitted:

Genetic information is likely to become, in future, an integral part of each patient’s individualised health care program. In my view, it is reasonable to assume that, over time, genetic information will become ‘smeared across’—so to speak—the individual’s clinical record, since it will be a relevant component of health status in many areas. Whether or not this information is or should be regarded as especially sensitive will depend, just like non-genetic information, on what it is.

The future role of genetic information within clinical care provides an important and pragmatic argument against genetic exceptionalism. Ultimately, there will be little point in seeking to compartmentalise and quarantine genetic health information behind additional privacy or security barriers. A generic solution to the privacy challenges of genetic health information is preferable.[47]

3.54 By contrast, some submissions supported the exceptional nature of genetic information. The New South Wales Nurses’ Association submitted that genetic information:

is more powerful than other forms of health information. As such it requires special legal protection and other exceptional measures … Our position is based upon a clear potential for abuse by significant decision makers—employers, insurers and public authorities.[48]

3.55 Ian Turnbull criticised the approach identified by the Inquiry in DP 66:

The Inquiry’s acceptance of the anti-exceptionalist position … is fundamentally flawed in that the concern and interest and need for the inquiry itself deny that position. It denies the untapped resource and probable rapid advances that will flow from the Human Genome Project and, unfortunately, from the reported gestations that are supposed to provide the first human clones. It is the easy option and non-predictive approach and reflects why the law always lags behind advancing technologies. In my view the main reason that genetic information is unique is because every single piece contains to some predictable extent information about third parties which those third parties may not even know. The modern advances go to improving the predictability, turning probabilities into certainties.[49]

Towards a contextual approach

3.56 The University of Michigan’s Life Sciences, Values and Society Program has noted that:

Throughout the early 1990s many state legislatures pursued an exceptionalist approach, however as the nation moved into the 21st century state legislatures nationwide seemed to be moving towards the middle ground.[50]

3.57 This trend is also reflected in the Inquiry’s approach to these issues. There is little value in choosing between opposing schools of thought for the purpose of defining our own philosophy about the nature of genetic information. The Inquiry accepts enough of the inclusivist or anti-exceptionalist argument to believe that it would be a mistake to deal in isolation with the issues surrounding genetic information through a single piece of dedicated legislation—for example, a Genetic Privacy, Discrimination and Research Act. To do so would unfairly privilege genetic information as against all other forms of relevant health and medical information—so that, for example, a person suffering from a genetically linked cancer is ‘in’, but someone suffering a cancer that is not (currently) known to be genetically linked is ‘out’. Equally importantly, such an approach would divorce genetic information from the principles, processes and institutions that have been developed over time to provide ethical oversight of research, ensure best practice in clinical medicine, protect personal privacy, and prohibit unlawful discrimination.

3.58 The Inquiry certainly does accept that there are some special features and issues attaching to genetic information such that it is necessary to engage in a thorough inspection of the existing legal, ethical and regulatory landscape to ensure that they are adequate to the task.

3.59 Magnusson has suggested that there may be less of an exceptionalist case for dealing with genetic information than for HIV/AIDS information:

Genetic exceptionalism has a prominent precedent in HIV/AIDS, a life-threatening infection that emerged in an environment of widespread ignorance and prejudice. Gradually, over a period of about 10 years, Australian legislatures enacted a body of AIDS-specific laws in most jurisdictions.[51] On the other hand, unlike information relating to HIV/AIDS status, there is nothing discrete or self-contained about genetic information as a form of health information. As clinical genetics continues to develop, any attempt to compartmentalise genetic health data from other forms of health information will likely become unworkable. This is because—as the clinical implications of the genetic determinants of disease come to be better understood—genetic testing, and the volume of clinical genetic information, will both increase. Genetics-specific privacy laws will only contribute yet another layer of legal complexity (and health privacy law is already bewilderingly complex), while constituting a major irritant to health providers themselves.[52]

3.60 The Centre for Law and Genetics also recommended that the Inquiry

pursue the ‘integrated’ approach for the following reasons:

· the issues raised in the protection of human genetic information cover a wide range of activities from research to establish medical practice;

· regulation in this range of areas has traditionally centred on professional codes of ethical practice;

· many genetic tests produce results that do not differ to any great extent from other categories of private health information; and

· in the next decade genetics will become a less unique and more commonplace tool in diagnosis, treatment, and healthcare generally.[53]

3.61 Privacy NSW submitted that:

On one view the kind of information derived from DNA samples is so utterly unlike other kinds of personal information that it needs to be the subject of separate regulation. Arguments in favour of the separate regulation of genetic information are particularly appealing in the current regulatory environment where information privacy protection varies widely across and within jurisdictions.

On another view, the social implications of genetic information are so broad that a specific regulatory framework, just for genetics, would be unlikely to pick up all of them. Separate genetic regulation may risk engendering an overly deterministic approach to health care and privacy which fails to adapt to changing issues and technology. Integrating genetic safeguards in mainstream privacy legislation may ensure a more consistent and open process of adaptation to new social values and needs. In some specific areas such as insurance and employment, however, the exceptional features of genetic information may justify special treatment.[54]

3.62 The bulk of this Report examines the use of genetic information in a variety of different contexts.[55] Where existing laws or processes are inadequate or inappropriate, the Inquiry has recommended their reform. Where there are major gaps, the Inquiry has proposed a number of new, targeted laws and processes.

3.63 In recognition of the fact that genetic science and technology are moving very rapidly, the Inquiry has also recommended that a new standing body—the Human Genetics Commission of Australia—be established to provide on-going advice to government.[56]

[33] This Model Bill strongly influenced the Genetic Privacy and Non-discrimination Bill 1998, introduced into the Australian Parliament by Australian Democrats Senator Natasha Stott Despoja in March 1998. See Australian Law Reform Commission and Australian Health Ethics Committee, Protection of Human Genetic Information, IP 26 (2001), ALRC, Sydney [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, Provisions of the Genetic Privacy and Non-discrimination Bill 1998, The Parliament of Australia, <>, 21 August 2002, 1. The Bill was restored to the Senate Notice Paper on 14 May 2002.

[34] 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, 365.

[35] Ibid, 360.

[36] Ibid.

[37] President of the Hastings Center for Bioethics, in New York; formerly Chair of the Human Genome Project’s ELSI Task Force on Genetic Information and Insurance.

[38] T Murray, ‘Genetic Exceptionalism and “Future Diaries”: Is Genetic Information Different From Other Medical Information?’ in M Rothstein (ed), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (1997) Yale University Press, New Haven, 60, 64.

[39] Professor of Law, Georgetown University and Professor of Public Health, Johns Hopkins University.

[40] L Gostin, ‘Genetic Privacy’ (1995) 23 Journal of Law, Medicine and Ethics 320, 326.

[41] L Gostin and J Hodge, Jr, ‘Genetic Privacy and the Law: An End to Genetic Exceptionalism’ (1999) 40 Jurimetrics 21.

[42] T Murray, ‘Genetic Exceptionalism and “Future Diaries”: Is Genetic Information Different From Other Medical Information?’ in M Rothstein (ed), Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (1997) Yale University Press, New Haven, 60, 64.

[43] Ibid, 60.

[44] Ibid, 67.

[45] Ibid, 71.

[46] Commonwealth Department of Health and Ageing, Submission G150, 15 April 2002.

[47] R Magnusson, Submission G039, 10 January 2002; Queensland Government, Submission G161, 16 May 2002.

[48] New South Wales Nurses’ Association, Submission G090, 21 January 2002.

[49] I Turnbull, Submission G277, 21 December 2002.

[50] Life Sciences Values and Society Program (University of Michigan), Genetic Testing, <>, 20 February 2003.

[51] R Magnusson, ‘Australian HIV/AIDS Legislation: A Review for Doctors’ (1996) 26 Australian and New Zealand Journal of Medicine 396; J Godwin and others, Australian HIV/AIDS Legal Guide (2nd ed, 1993) Federation Press, Sydney.

[52] R Magnusson, Submission G039, 10 January 2002.

[53] Centre for Law and Genetics, Submission G048, 14 January 2002. See also Department of Human Services Victoria Genetics Advisory Committee, Submission G089, 24 January 2002; Life Sciences Network, Submission G129, 19 March 2002.

[54] Office of the Privacy Commissioner (NSW), Submission G118, 18 March 2002.

[55] The Queensland Government also has urged a contextual approach, noting that ‘it would appear that a single new enactment may not be sufficient to overcome situations where there may be a threat of discrimination, in for eg insurance or employment, or threat to privacy and confidentiality’: Queensland Government, Submission G161, 16 May 2002.

[56] See Ch 5.