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	Murdoch University Electronic Journal of Law

Genetic Non-Discrimination, Privacy and Property Rights

Author:	Mathew Stulic BEcon, LLB(Hons)(Macq) Macquarie University School of Law
Issue:	Volume 7, Number 2 (June 2000)

Contents

• Introduction
• The Basis of Genetic Information - A Brief Scientific Background
• The Distinctive Qualities Of 'Genetic Information'
• 'Discrimination'
• Genetic Discrimination In Employment
• The Evidence
• Nathan's Case
• Discrimination Issues in the Employment Context
• Present Regulation Relating to Genetic Discrimination In Employment
• The Genetic Non-Discrimination and Privacy Bill, 1998 - The Employment Provisions
• Genetic Discrimination In Insurance
• Evidence
• The Concept of Insurance
• The Current Approach Of Risk 'Classification' - Historically Specific
• The 'Asymptomatic Ill' and Insurance
• Current Disease Or Certain Future Disease and Insurance
• Present Regulation Relating To Genetic Discrimination In Insurance
• The Genetic Non-Discrimination and Privacy Bill 1998 - The Insurance Provisions
• The Human Genome and Medical Research - The Issue Of Property Rights
• Genomic Issues In Medical Research - Moore v Regents Of The University of California
• The US Legislative Response To Moore
• Present Medical Research In Australia - Self-regulation and The Proposed Reforms
• Is A Property Discourse Appropriate For Genetic Information?
• Concluding Remarks
• Notes

Introduction

"The human genome underlies the fundamental unity of all members of the human family, as well as the recognition of their inherent dignity and diversity. In a symbolic sense, it is the heritage of humanity".[1]

1. This paper intends to assess the potential issues that arise in the context of genetic information. It shall be contended that genetic information creates the possibility of a new underclass, namely the 'asymptomatic ill'[2] An examination and critique of the existing legislative provisions that provide possible protection for the 'asymptomatic ill' shall be undertaken, as well as a discussion of reform proposals.

2. An underlying theme of this paper is that the use of 'primary identifiers' to classify individuals according to certain characteristics is fraught with danger, and in certain circumstances, is illogical. Thus, the ideal of 'genetic non-discrimination' is considered in this context. The notion of genetic 'privacy' is also considered in the sense that the concept of 'privacy' has been canvassed as a means of preventing genetic discrimination. It shall be shown that proposals to utilise the concept of "informed consent" in the context of genetic privacy may not be appropriate, since the fundamental unit of the "individual", upon which informed consent is based, ignores the fact that genetic composition is an issue that extends beyond the concept of the "individual".

3. The federal regulatory mechanisms that bear upon the human genome are to be considered in the areas of employment, insurance, and medical research - three areas that provide the main concern for the 'asymptomatic ill'. Each of these areas is to be considered in terms of the distinct problems that they pose for individuals with a particular genetic composition. The current federal regulation that bears upon genomic matter shall be shown to be only incidentally designed to address issues of genetic discrimination and privacy.

4. In this context consideration shall be given to the Genetic Privacy and Non-Discrimination Bill, which was introduced into the Senate in March, 1998.[3] At the time of writing, the Bill has not been passed, since the Senate's Legal and Constitutional Legislation Committee recommended that the Bill not proceed any further, pending a clarification of the issues surrounding genetic information.[4] The Bill, based upon an American model,[5] provides one possible avenue for a comprehensive schema of regulation of genetic information and a critique shall be offered of this proposed model. One of the main architects of the Genetic Privacy and Non-Discrimination Bill has stated:

   "I believe genetic privacy (and genetic discrimination) is best dealt with in a comprehensive privacy scheme. This Bill cannot stand without the broader privacy issues being addressed and should be seen as a contribution to the ongoing debate.......[W]ithout a comprehensive privacy scheme, similar to the scheme proposed by the Attorney-General, Bills such as this, and dealing with other areas of particular concern (such as surveillance, smart cards, electronic commerce, etc.) will be necessary. I would also note a range of other issues addressed by this Bill (such as the regulation of Australian research, consent, property rights over genetic materials etc.) need to be considered in this debate. I welcome this broader approach to privacy regulation in Australia and I hope the belated recognition of the need for this debate stimulates the necessary activity."[6]

5. Essentially, I hope to show that genetic non-discrimination and privacy are desirable policy objectives and that the legal system should, and can, be utilised as a means of achieving this objective. The main theme of this paper is that the present forms of regulation and proposals for a new schema of genetic regulation fail to fully address the distinct nature of genetic information in the sense that the traditional liberal unit of the 'individual' is a redundant concept in the context of 'shared' information. Prior to understanding why and analysing how to achieve the objectives of genetic non-discrimination and privacy, it is essential to provide a brief scientific background to the issue of geneticism.

   The Basis of Genetic Information - A Brief Scientific Background

6. Justice Michael Kirby has stated:

   " Perhaps from the perspective of history, the most important scientific breakthrough of this century may be seen in time, to be neither nuclear fission , nor interplanetary flight, nor even informatics, but the fundamental building and basal molecular biology which permits the human species to look into itself and find, at last, the basic building blocks of human and other life. Who knows where this discovery will lead the imaginative human mind? Lawyers, and indeed citizens everywhere , should begin thinking about the issue. In its resolution may lie the very future of our species."[7]

7. The 'basic building block', that Kirby refers to is a substance called deoxyribonucleic acid, or as it is more commonly known, DNA, which was discovered in 1953, by Watson and Crick.[8] DNA provides the 'code' for the structures and properties of proteins that exist within human cells.[9] Within the human body there are 23 pairs of chromosomes, which are each composed of DNA[10] DNA is a hereditary material and 'genes' are segments of the 'chemical steps' along the DNA.

8. There have been few attempts in Australia at a comprehensive legal definition of genetic information or to articulate a legal perspective of DNA. One such attempt was made by Heerey J in Genetics Institute, Inc v Kirin-Amgen (1998): "The genetic material of any organism is the substance that carries the information determining the properties of that organism. All the genetic information of an organism is collectively referred to as its genome. The genetic material in all organisms, apart from viruses, is a form of nucleic acid called DNA (short for deoxyribonucleic acid). Thus, the complete genetic material of an organism is called its genomic DNA."[11]

9. Heerey J mentioned the concept of 'determinative information'. At the outset, to fully appreciate the unique position of genetic information and the reasons that such information is valued for its predictive ability, it is imperative to appreciate the distinction between 'genotype' and 'phenotype':

   "Scientists use the label 'genotype' to distinguish between different versions of the same gene and the label 'phenotype' to distinguish different traits, characteristics, or predispositions produced by genes. Many different genotypes can produce the same phenotype , and different phenotypes can arise from the same genotype. The latter is true because genes alone are not usually determinative. Both genotype and the environment - 'nature and nurture' - affect phenotype."[12]

10. The proposed Genetic Privacy and Non-Discrimination Bill, includes in s.7, a definition of 'genetic information':

                   "(a) information from a DNA sample about genotypes; or
                    (b) information from mutation analysis; or
                    (c) information about nucleotide and polypeptide sequence(s) or;
                    (d) information about gene(s) or gene products..."[13]
    

11. Of particular importance is the role that genetic 'testing' plays , and what the results of such tests reveal in terms of genetic variations. This is particularly vital in identifying actual diseases and predispositions for diseases. Central to the argument presented are three types of test, which reveal three differing categories of individuals, which arise because of the distinction between genotype and phenotype: "Genetic testing can identify individuals with three types of genetic conditions : (i) individuals who currently have , or are certain to develop a genetic disease directly attributable to a specific chromosome or gene defect; (ii) individuals who do not possess a genetic disease but, nonetheless, are carriers of the disease; and (iii) individuals with a genetic predisposition to disease in the future."[14]

12. Hence, there are diseases such as Huntingdon's disease or cystic fibrosis, whereby the presence of the impugned gene in the body indicates that the individual either presently has the disease or is certain to develop the disease in the future. Such ailments where genotype is determinative of phenotype, are quite rare. Thus, the vast bulk of genetic information is in the form of probabilities of future events and future developments, a point which is vital, yet often overlooked in considering how to approach the notion of genetic information.

13. The scientific developments, as just outlined, are integral to genetic discrimination and privacy discourse, since there is evidence to suggest that they are increasingly providing a basis for differential treatment in certain contexts. A San-Francisco based physician has commented: "Just as we don't allow people to be discriminated against on the basis of race or sex, we shouldn't allow them to be discriminated against based on an analysis of their DNA."[15]

14. This paper essentially seeks to explore the nature of genetic discrimination, and justifications for its explicit prohibition, particularly in the areas of employment and insurance - two areas that can potentially provide large problems for the 'asymptomatic ill'.

    The Distinctive Qualities Of 'Genetic Information'

15. Upon considering the scientific background of DNA and geneticism, it is now imperative to clearly outline what it is about 'genetic information' that distinguishes it from other forms of health or personal information. For the purposes of the argument presented in this paper, it is worth noting some of the distinctive characteristics of genetic information. Firstly, genetic information is unique in the sense that : "..a person shares part of his or her genetic make up with genetic relatives, so genetic testing information about the person can also yield information about genetic relatives; in a sense, genetic testing information is information about more than one person....."[16]

16. This feature of genetic information is crucial to one of the central arguments presented about the federal legislative reform proposals, namely, that the basis of the "individual" may not be appropriate in the context of regulation of the human genome.

17. A recent article in the Privacy Law and Policy Reporter succinctly stated the defining aspects of genetic information:

    "- a persons genetic characteristics influence many of the things (like physical appearance and some psychological characteristics) that affect his or her sense of personal identity; - by and large, a person's genetic characteristics are with him or her for life - they cannot be changed; - some genetic testing information has great predictive power about a person's future experiences and; - in making predictions about the future, genetic testing information often only tells us about the chances that something will occur - it does not tell us that it certainly will."[17]

    These characteristics and the scientific basis of genetic information must be borne in mind in any discussion of federal regulation in this area.

    'Discrimination'

18. Citizens with particular genetic compositions are being discriminated against, and have the potential to be discriminated against, in a variety of contexts. Evidence shall be presented to establish such a proposition. Prior to considering the empirical evidence, a clarification should be made of the manner in which the term 'discrimination' is being utilised throughout this paper:

    "In general terms, discrimination is any practice that makes distinctions between individuals or groups so as to disadvantage some and advantage others. To find out whether one person has discriminated against another person involves a comparison between how the other person is treated and how a real or hypothetical person of a different status (such as sex or race) is treated."[18]

    Thus, genetic discrimination refers to genetic information being utilised to create distinctions as the basis for differential treatment.

19. The remainder of this paper is devoted to discussing why genetic discrimination is undesirable, a consideration of current legal remedies for those who have been discriminated against on this basis, and a critique of the proposed schema of genetic non-discrimination and privacy regulation. It is difficult to undertake such a task in the abstract. Thus the discussion shall continue in the context of the main areas where genetic information either poses or potentially poses problems for those with 'abnormal' genetic compositions- namely employment, insurance, and medical research.

    Genetic Discrimination In Employment

    The Evidence

20. The vast bulk of empirical evidence surrounding genetic discrimination in employment is found in literature emanating from the USA. For example, a 1996 survey funded by the Human Genome Project in Bethesda, Md, attempted to launch the most comprehensive study thus far of genetic discrimination in employment.[19] The methodology utilised was to survey individuals who were members of support groups for rare genetic anomalies, and each person was asked whether he or she or a family member encountered difficulties with employment, health insurance or life insurance. Sternberg has outlined the results of the survey. In so far as the survey results are relevant to genetic discrimination in employment : "....13% [of respondents] believed the [genetic] information had led to job discrimination."[20]

21. In considering the provisions of the Genetic Non-Discrimination and Privacy Bill , 1998 (Cth.), the Senate's Legal and Constitutional Legislation Committee reported that, upon considering all of the submissions before it,:

    " The committee acknowledges that there is little evidence that Australian employers are seeking genetic information. Nevertheless, it appears certain that genetic testing will assume increasing prominence in Australian employment practices and consequently give rise to privacy and anti-discrimination issues."[21]

22. Griffin has noted that no one in Australia has litigated as yet to claim discrimination on genetic grounds.[22] It is arguable that the paucity of empirical evidence in Australia on genetic discrimination in employment is that 'job discrimination' is more common place in the USA, where employers are usually also responsible for health insurance ( an area that shall be returned to shortly).[23] Despite the lack of large-scale empirical evidence in Australia on the extent of genetic discrimination in employment, there is anecdotal evidence which is worth considering since such anecdotes are quite effective in providing a basis for identifying some of the main themes as to why genetic discrimination in employment is undesirable.

    Nathan's Case

23. In order to explore issues relating to why genetic discrimination is undesirable, a somewhat discomforting case study shall be discussed - a case of blatant genetic discrimination in employment. This case study has been extracted from Sandy Taylor's article in Australian Social Work.[24] In this particular example, the emphasis is on the individual that falls within the category of : "...individuals who currently have, or are certain to develop a genetic disease directly attributable to a specific chromosomal or gene defect....."[25]

24. Diseases that fall within this area have the feature that if an individual has a single gene 'abnormality', then they will definitely develop the specific disease at some stage in their life. In terms of the hereditary aspect, if one parent has the specific genetic deviation, then an offspring of the parent has a 50% chance of inheriting the gene and thus, of later developing an illness.

25. The case study presented by Taylor, involves the debilitating Huntingdon's disease. This affliction envelops its victim by riddling them with involuntary movements, impaired speech and dementia. Taylor presents the case of an 18 year old male - 'Nathan' - who grew up watching his mother 'Eva', deteriorate into a helpless individual after the onset of Huntingdon's disease. [26] Nathan did not seek a genetic test to establish whether he had the specific gene causing Huntingdon's disease, however, he was aware that because his mother had the condition, there was a possibility that he could have inherited the gene - although there was no certainty. Nathan applied for a job in the public sector: "After matriculating from College with above-average marks , Nathan applied for acceptance into his long-chosen career in the public sector and was placed in the top 5% of applicants. The final entry requirement was to pass the medical examination."[27]

26. In response to the requirements of the medical examination, Nathan submitted that there was a history of Huntingdon's disease in the family. The fact that Nathan was bright and a high-achiever did not appear to be enough. The Department concerned informed Nathan that the job was his on the condition that he submitted to a genetic test and that it subsequently proved negative for the genotype that causes Huntingdon's disease.

27. Nathan did not undergo the test, but began an appeal process through the Department - eventually being employed after a lengthy process, but on the proviso of a number of conditions being met. He gladly accepted.[28] The case of Nathan shows that genetic discrimination does not merely require actual genetic conditions to be present, but perceived conditions can be the basis of discriminatory treatment as well. As Taylor has stated: "This is biological determinism at its worst."[29]

28. I shall now consider why such treatment on the basis of genetic information is so abhorrent in employment, prior to analysing the present federal regulation of the human genome in this context, and then a consideration of the reform proposals of the Genetic Non-Discrimination and Privacy Bill, 1998 (Cth.), in so far as it attempts to prohibit genetic discrimination in employment as a discrete category.

    Discrimination Issues in the Employment Context

29. Such treatment in employment is abhorrent and raises a few points of particular concern. This treatment creates a new potential underclass - what Billings refers to as the 'asymptomatic ill'.[30] An individual that has no present manifestations of an illness that they may or may not eventually get, is being treated differently to others in the same position. Such an approach denies the ability of potentially excellent employees to fill a job vacancy, based on one genetic factor (or as in Nathan's case, a 'perceived' genetic factor). So in Nathan's case, his ability to contribute to the organisation is not seen as being more significant than the possibility that he may have an 'abnormal' genetic composition - a perplexing proposition.

30. This form of genetic discrimination in employment is problematic for further reasons. Nathan was firstly denied employment and then, was provided with conditional employment because he may have the gene that causes Huntingdon's disease. This is problematic because other employees are not treated in the same manner. Such an approach to Nathan's application and subsequent employment is concerning because, it is not the case that this differential treatment exists because there is a problem inherent in the person themselves, or their ability to fulfil required tasks. Rather, I would contend that each individual is susceptible to certain ailments and has certain predispositions, but the technology does not yet exist to screen other applicants for their own possible future risks. Therefore, it is a tenuous position to attach conditions to some individuals and not others in employment merely because the technology and knowledge exists to detect some genetic diseases, but others cannot have their own risks similarly assessed. In this context, it is significant that researchers estimate that each human being carries at least 20 'defective' genes that may indicate predisposition to disease, however, such genes have yet to be 'mapped'[31] - thus every individual could theoretically be susceptible to exclusion in employment on the basis of genetic discrimination if such issues remain unregulated.

    Present Regulation Relating to Genetic Discrimination In Employment

31. It is contended that the present legal measures available to an individual who is discriminated against in an employment context on the basis of their genetic composition, are only incidentally, if at all, designed to deal with issues of genetic discrimination in employment. The main federal legislative provision available to an aggrieved individual such as Nathan is, arguably, the Disability Discrimination Act, 1992 (Cth.), although it must be noted that this legislation has not yet been utilised in such a context.

32. s.15(1) of the Disability Discrimination Act expressly prohibits discrimination on the basis of a 'disability' by an employer:

    "It is unlawful for an employer or a person acting or purporting to act on behalf of an employer to discriminate against a person on the ground of the other person's disability or a disability of any of that other person's associates : (a) in the arrangements made for the purpose of determining who should be offered employment ; (b) in determining who should be offered employment; or (c) in the terms or conditions on which employment is offered."

33. It is arguable that s.15(1) would provide some degree of protection to an individual discriminated against on the basis genomic matter in employment. Such an argument is made possible by virtue of the broad definition of 'disability' within the Act. s. 4(1) of the Disability Discrimination Act outlines 'disability' as including : " ...... a disability that : (h) presently exists; or (i) previously existed but no longer exists; or (j) may exist in the future; or (k) is imputed to a person."

34. Thus it is conceivable that the discovery of a 'genetic defect' that indicates the presence of a particular disease or a susceptibility to a particular disease that could manifest itself in a 'future disability', could come within the definition of 'disability' as utilised in the Disability Discrimination Act. The 'asymptomatic ill' could potentially fall within this category. It is also worth noting that genetic discrimination in employment can occur without the use of genetic tests per se. As was shown in Nathan's experience, the individual can be cast as genetically 'inferior' without undertaking any diagnostic testing - hence, there is an 'imputation' of disability, rather than an actual disability. The Disability Discrimination Act covers this contingency as well.

35. It has been argued that genetic discrimination in employment appears to be prohibited by the Disability Discrimination Act, 1992 (Cth.). It is also important in discussing the present regulatory provisions relating to the human genome as the basis for discrimination in employment, that the present scheme provides certain exceptions - certain avenues for 'legalised' discrimination.

36. The main exception which sanctions discrimination on the basis of 'disability'in employment is related to 'the inherent requirements of the job'. Essentially, the legal system sanctions discrimination of the disabled in the employment context if the individual is unable to carry out the inherent requirements of the job: "The inherent requirements of a job are those that are necessary for the goals of the job to be achieved . In the context of people with disabilities , care must be taken not to confuse the goals the job is meant to achieve with the way in which the job is carried out. The latter is not necessarily an inherent requirement."[32]

37. It is contended that attempting to accommodate genetic non-discrimination issues in an employment context within the disability discrimination model provides certain concerns. Although it has been suggested that genetic disease or predispositions for disease would probably fall within the meaning of 'disability' in the Disability Discrimination Act, there have been no definitive judicial statements on the matter. Thus it is not entirely clear whether such legislation actually encapsulates genetic information and the distinct issues surrounding it. If the legislation does cover genetic discrimination in employment, it only does so incidentally, and does not capture the unique issue of genetic discrimination. To the extent that this particular aspect of the regulation of the human genome is 'incidental' regulation, it is arguable that there is no schema of regulation of the human genome in terms of discrimination in employment. Thus, the proposals put forth in the Genetic Non-Discrimination and Privacy Bill, 1998 , are integral to the discussion since they represent the first federal attempt at providing a comprehensive schema to outlaw genetic discrimination in the Australian workplace.

    The Genetic Non-Discrimination and Privacy Bill, 1998 - The Employment Provisions

38. UNESCO adopted a Universal Declaration on the Human Genome and Human Rights on 11 November 1997.[33] The Declaration was non-binding on member states, however member states were urged to introduce legislation to promote the principles set out in the Declaration. Therefore, the elements of the Genetic Non -Discrimination and Privacy Bill (the 'Bill') relating to discrimination in employment could be considered as a response to the principles laid out in the Declaration, in particular, Article 6 : "No one shall be subject to discrimination based on genetic characteristics that is intended to infringe or has the effect of infringing human rights, fundamental freedoms and human dignity."[34]

39. The aspects of the Bill that need to be assessed in so far as they outlaw genetic discrimination in the workplace, are predominantly in ss.17 and 18. A critique shall also be offered of the notion of 'consent' that is the bedrock upon which the Bill is built upon. A brief analysis of the proposed 'exceptions' available to employers under this Bill shall also be undertaken, as well as an elementary, but crucial, consideration of the definition of 'genetic information'.

40. The stated objective of the Genetic Non-Discrimination and Privacy Bill is : "A Bill for an Act to protect the genetic privacy of individuals, to prohibit genetic discrimination and to provide for the collection, storage and analysis of DNA samples."[35] S.17 provides an outright prohibition on genetic discrimination, but the provision must be read in the light of the exceptions for employers provided in s.18. s.17(1) states:

    "It is unlawful for a person to do any act involving a distinction, exclusion, restriction or preference based on genetic information which has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise, on an equal footing, of any human right or fundamental freedom in the political, economic, social, cultural or any other field in public life."[36]

    S.17(1) must be read in the context of the following provision, s.18 which states:

    An employer may request or require or use the genetic information of an employee for the purposes of :
    (a) permitting a genetically susceptible employee to avoid exposure to substances with a mutagenic or teratogenic effect; or
    (b) determining a genotype that is otherwise directly related to the work and is consistent with business necessity; but an employer must not require , or use the genetic information of an employee or prospective employee for any purpose restricting any right or benefit otherwise due or available to the employee or the prospective employee."[37]

41. As has been mentioned in an earlier section, the definition of 'genetic information' that has been utilised in the Bill is quite wide. 'Genetic information' includes information from a DNA sample, information from mutation analysis, information about nucleotide and polypeptide sequences, and information about genes and gene products. The term 'information about genes and gene products' appears to be a broad formulation that would apply to circumstances such as that involving the case of Nathan, namely where differential treatment is not based necessarily upon the results of genetic tests per se, but as has been seen, an individuals' genetic composition or imputed genetic composition, on the basis of family history, can potentially provide a basis for discrimination in employment. Such bases for discrimination in employment would appear to be outlawed by the Bill.

42. This particular formulation of 'genetic information' would effectively provide a comprehensive schema of federal regulation for aggrieved individuals such as Nathan, rather than the current regime whereby the Disability Discrimination Act would be the first port of call, its parameters uncertain in this area.

43. The exceptions available to employers are of considerable concern, particularly the new discourse of 'business necessity'. In the aftermath of the Second Reading stage of the Genetic Non-Discrimination and Privacy Bill, a number of interest groups responded to the Bill and its various provisions in terms of outlawing genetic discrimination in employment. Indicative of the predominant criticisms of the exceptions of 'business necessity' and 'protection from occupational hazards', was the response of the Australian Medical Association (AMA). The Australian Medical Association criticised the bill on the grounds that it allows employers to require genetic information, under the pretence of protecting an employee from hazards to which he or she may be particularly susceptible. [38] Overall the AMA, "viewed the proposed legislation as not going far enough towards balancing the protection of individuals from potential genetic discrimination."[39]

44. There are no mechanisms within the bill that ensure that an employer must substantiate his or her request for genetic information as being based upon the recognised legal exceptions of 'business necessity' and 'protection from occupational hazards'. Regardless of this aspect, the exceptions to the prohibition of genetic discrimination in employment are still problematic in the sense that the boundaries of 'business necessity' and what actually constitutes an 'occupational hazard' are unclear.

45. The bill was based upon model US legislation which was introduced into the US Senate on 11 March 1997, entitled the Genetic Confidentiality and Non-Discrimination Bill 1997, which was sponsored by Senators Domenici, Dodd and Jeffords. In the emergent US literature surrounding the introduction of such legislation, it appears that the predominant argument propounded by supporters of the 'exceptions' to genetic discrimination in employment, is that the potential dangers alluded to, for example by the AMA, are circumvented by the requirements of 'consent' and 'authorisation' of the use of genetic information by the individual. I contend that this notion of 'consent' as utilised in the Genetic Non-Discrimination and Privacy Bill is fundamentally flawed in the context of genetic information, and as such a rethinking of the 'consent framework' is essential.

46. S.8 of the Genetic Non-Discrimination and Privacy Bill states:

    "(1) A person may disclose genetic information in a genetic record characterised from the DNA sample of an individual only if :
    (a) the individual has authorised the disclosure; or
    (b) the disclosure is required or authorised by or under law; or
    (c) the person believes on reasonable grounds that disclosure is necessary to prevent or lessen a serious or imminent threat to the life or health of an individual or of another person.
    (2) The person to whom genetic information has been disclosed may redisclose the information only to the extent reasonable in the exercise of judgement for professional medical consultation for the direct benefit of a patient or with the written authorisation of the individual."

47. The comprehensive process of 'authorisation' for disclosure is outlined in s.9:

    "(1) To be valid, the authorisation must comply with each of the following :
    (a) it must be in writing, signed and dated, and
    (b) it must identify the person concerned, and
    (c) it must describe the specific genetic information to be disclosed and,
    (d) it must identify the person to whom the genetic information is to be disclosed, and
    (e) it must describe the purpose for which the disclosure was made and,
    (f) it must indicate the date on which the authorisation expires and;
    (g) there must be a statement that authorisation can be revoked or amended."

48. It was argued in the United States context that the tandem operation of ss 8 and 9, would prevent employers in a specific industry, for example, from compiling databases and 'blacklists' of individuals with desirable or undesirable characteristics, thus preventing information sharing between employers, unless of course, the individual has consented to such a use.[40]

49. Whether such legislative provisions are effective in preventing the flow of sensitive genetic information amongst employers and thereby preventing genetic discrimination in employment, is unclear. What is clear though, is that the model of consent that has been proposed is entirely inappropriate for use in the context of genetic information.

50. Kaveny has discussed these same issues in the American context, and the arguments apply equally to the Australian reform proposals.[41] The essential difficulty with the consent model is that the model is based upon the 'individual' as the basic unit of regulation. The difficulty with this approach is that it has been shown earlier in the paper that 'genetic information' extends beyond the bounds of the category of the 'individual'. Genetic information is unique in the sense that it carries 'shared' information about an individual, his or her relatives, and indeed human kind. Kaveny argues : " The prevailing understanding of medical information sees patients as atomistic individuals whose interests - and records - can neatly be separated form those of their families......[B]y highlighting the relational nature of all human beings, the Human Genome Project challenges much individualism at its core."[42]

51. To ignore this critique of the notion of consent utilised in the Genetic Non-Discrimination and Privacy Bill, results in a limited view of 'law' and the 'legal system'. Whilst an underlying theme of this paper is that the 'law' should be used as a means of effecting social change, social change arises from a variety of perspectives. Thus, in a sense described by Cotterell, 'law' provides an important ideological and educative function, in conjunction with its more basic 'instrumental' objectives.[43]

52. Whilst the requirement of 'consent' as provided for in the Bill may alleviate somewhat, the potential for disclosure by employers to fellow employers of genetic information, the model of 'consent' that is utilised to buttress the schema, ignores the 'shared' nature of genetic information. As such, the Bill suffers from a paradox. By using the unit of the 'individual' and abstracting from the 'relational' nature of genetic information, the bill fails to articulate what makes genetic information issues so distinct, and worthy of a comprehensive schema of regulation of its own. It has been shown how this relates to the particular problems faced by the 'genetically impure' in an employment context. Therefore, whilst the proposed Genetic Non-Discrimination and Privacy Bill is an advance upon existing measures to prevent genetic discrimination in employment, through making individual consent and authorisation integral aspects of the schema, the Bill fails to fully come to terms with the relational nature of genetic information.

    Genetic Discrimination In Insurance

    Evidence

53. Most of the current developments in the discourse of genetic discrimination internationally, have centred upon the issue of genetic discrimination in insurance. Consider the case of Jamie Stephenson:

    "In New Hampshire, the health insurance policy of Jamie Stephenson and her family, was terminated because two of her four sons were diagnosed with fragile-x syndrome, an alteration of a gene on the x-chromosome that is associated with mental retardation. After a three year hiatus, Stephenson says her family was recently able to get health coverage through a group policy sponsored by the National Association for the Self-Employed. But, as the coordinator of the Fragile-X Center of Northern New England, Stephenson says she continues to hear of cases in which insurance is curtailed or limited to families in which fragile-x syndrome is present."[44]

54. There is international evidence to suggest that genetic composition is becoming a factor in the denial or curtailment of insurance coverage. This is true of health insurance, as discussed above and life insurance. Low, King and Wilkie have released an empirical study of genetic discrimination in the British life insurance industry, in the British Medical Journal.[45] The results of the survey were that 33.4% of the study group (which comprised individuals from a host of genetic support groups) faced difficulties when applying for life insurance compared with 5% of applicants in a control group.[46]

55. The Senate's Legal and Constitutional Legislation Committee, after considering submissions in relation to the Genetic Non-Discrimination and Privacy Bill, found that there was little evidence that insurers are requesting or demanding genetic test results in Australia. The suggestion is that in the health insurance context, this is probably the result of a universal health care system in Australia as compared to the USA.[47] However, the issues that genetic discrimination in insurance give rise to are still relevant to the Australian context - in an era of 'small' government, de-regulation of the health care system may not be an impossible scenario, and as such, an analysis of existing federal regulation with respect to genetic issues in insurance and reform proposals, are warranted. I consider first, the notion of 'insurance' , and identify the issues that it raises for regulation of the human genome, prior to considering the current state legal provisions.

    The Concept of Insurance

56. From the evidence cited above, it appears that impairment of insurance coverage is a considerable issue for the 'asymptomatic ill'. The insurance industry is essentially about the pooling of risk by the risk averse , to offset the possibility of future losses in a vast array of areas - health, life expectancy, and income are the most easily identifiable areas. A clear articulation of the principle of insurance is provided by Brown : " The purpose of insurance is to minimise financial losses that may arise from unexpected events. Insurance operates by spreading risks over a large population of insureds so those individuals who do not have losses help pay for the losses sustained by those who do. Insurance works on the principle that there must be uncertainty that a loss will occur and that the loss is beyond the control of the insured."[48]

57. Current insurance practice also involves a system of 'risk classification'. This is a process whereby individuals seeking insurance are differentiated according to certain characteristics attributed to them and are charged differing premiums or denied coverage according to the perceived degree or risk of loss that they present. Such a practice is the epitome of 'discrimination'. Such a practice is the manifestation of 'differential treatment'. To use 'sex' as an example : sex correlates with risk in the eyes of insurers , for example, women have higher 'losses' in terms of life expectancy and use of medical services. Thus under a system of risk-classification, you would separate women and charge them higher premiums according to their degree of loss and risk,

    The Current Approach Of Risk 'Classification' - Historically Specific

58. Insurance is about risk 'classification'. The concept of risk distribution does not axiomatically entail a system of classification as currently exists. I contend that the current regime of classification according to attributed characteristics is only one type of insurance system available to us. It represents a specific historical development.

59. One can observe the experience of nineteenth century insurance models as a contrast.[49] In that era, individuals were not differentiated and discriminated against on the basis of attributed characteristics:

    "....[e]ach member of these 'assessment societies' paid the same premium , regardless of age , and received the same benefit at death......[I]n an insurance system without classification, insurers pool the expected losses of all their insureds by paying a premium equal to the average expected loss."[50]

60. The reason for the demise of these nineteenth century models , is the issue (that will shortly be discussed) that lies as an unarticulated reason for the exemptions for insurance in discrimination law - 'adverse selection'.[51] The reasoning is : 'classification eliminates adverse selection and protects the insurance industry from insolvency.'

61. I seek to challenge this framework through a consideration of the unique issues of genetically related conditions as a basis for risk-classification. Prior to considering the current Australian legal approach to these issues and the exemptions for insurance from the schema of anti-discrimination law in this country, I seek to explore the themes related to the justification of prohibiting the use of genetic information in insurance, in a conceptual manner.

    The 'Asymptomatic Ill' and Insurance

62. It is worth recalling the two different categories of individual with respect to genetic ailments: (i) individuals that, because of some genetic structure, carry a disease that may or may not manifest itself in the future or who are shown to have a genetic susceptibility to disease and (ii) individuals that currently have or are certain to develop a disease directly attributable to a given defective gene.

63. The 'asymptomatic ill' refers to the category of individuals with genotypes that are not necessarily determinative of phenotype, as explained earlier. For example : " A type of chronic spinal arthritis called 'ankylosing spondylitis' provides an example. Ninety per cent of those with this disease carry a certain genetic marker called 'B27' (about nine percent of the population) do not develop the disease. Thus while the B27 genotype is correlated with a higher risk of developing ankylosing spondylitis, it does not guarantee the development of the disease."[52] Hence, allowing discrimination (through non-standard coverage) on the basis of actuarial data in this type of category of genetic information is problematic.

64. In the British Medical Journal, it has been explained that there are actuarial reasons against the collection and use of genetic data by insurers : "As the scope for screening , particularly for polygenic disease escalates, insurance companies cannot possibly have the data to enable them to fine tune individual premiums. It is going to take decades to unravel the complex interaction between genetic, environmental, and individual factors in multifactorial disease, and the extent to which we can use this knowledge to improve health outcomes."[53]

65. Establishing categories of persons on the basis of genetic composition and using this as a foundation for differential treatment is discriminatory. I would suggest that it should be illegal even in the case where an insurer can fall back on the use of 'actuarial data'.

66. Prediction of loss when genotype is not determinative of phenotype, at present, is a lottery. It is inherently illogical to discriminate on the basis of genetic composition as a predictor of loss, if that very loss is dependent upon a host of other factors (for example, environment, access to services, diet etc.). The selection of genetic factors in the case of the asymptomatic ill is therefore arbitrary.

    Current Disease Or Certain Future Disease and Insurance

67. The mainstream view of genetic discrimination in the emerging literature in insurance, is that the use of genetic information in the case of the 'asymptomatic ill' is not warranted and should be treated as discrimination, however in the case of the genotype being determinative of phenotype in the strongest possible sense, (such as Huntingdon's disease) non-standard coverage (and even denial of coverage) is seen as legitimate because of the problem of adverse selection.[54]

68. Again, this represents an acceptance of a particular type of discrimination as legitimate. I contend that this view is not without its own deficiencies, and therefore, any form of discrimination in insurance on the basis of any category of genetic information should be prohibited. It is important to note that genetic technology developed primarily to assist in the early detection and treatment of gene-related disease. There are medical benefits of such technology. Therefore, the problem of adverse selection may not be as prevalent in this context, as it was in the nineteenth century associations. As Desmond Le Grys has stated : "Any tendency to adverse selection would be counterbalanced by the existing steady downward trend in mortality which will be fuelled by the health benefits of early intervention and treatment for polygenic disorders."[55]

69. Discrimination in insurance is seen as legitimate because adverse selection can harm the solvency of the insurance industry. If adverse selection is not a genuine harm to the insurance industry, then discrimination legitimated by such a concern, must be called into question. With potential decreases in mortality rates and health costs through early detection, the issue is by no means a certain problem. As such, genetic discrimination on the basis of genetic information should not be allowed even where genotype is determinative of phenotype - the justification for such a situation is tenuous. There is also the social policy consideration that individuals may not submit themselves for screening to aid early detection of disease, for fear of being 'blacklisted' - these are very real fears of the individuals concerned, and the overall health of society as a whole.

70. It may also be argued that any costs that could possibly arise from adverse selection are reasonable costs for insurers to bear in order to promote the ideal of anti-discrimination : "Proponents of the California law ....... argue that the costs are reasonable ones to ask insurers to bear. They point out that genetic disorders are not epidemic ; the number has been stable for as long as health insurance has existed in this country."[56]

71. Classifying and then excluding individuals from insurance coverage on the basis of genetic information also creates conceptual problems for the notion of 'insurance'. Firstly, it is worth recalling that insurance is about spreading unexpected losses over a large population. Large-scale genetic testing and use of genetic information by insurers to deny coverage can reduce the population of those insured, as individuals are 'black-listed'.

72. Hence, such an approach, again, sees insurance determined by technology : "Although just 3% of children are born with rare genetic anomalies like Marfan syndrome, researchers say the pool of potential victims of discrimination will expand each time science pinpoints a gene, or a group of genes, that raises a persons risk of developing such illnesses as heart disease or breast cancer."[57]

73. Also, it is important to note the role of 'unexpected loss'. If we were in a world where insurers could require compulsory genetic testing, it is conceivable that individuals tested and classed as 'genetically pure' would have no reason to purchase insurance. Those classed as 'genetically impure' would be banned from purchasing insurance. The amount that are allowed to purchase insurance, but at higher premiums, would purchase insurance to cover an 'expected loss'. Since insurance is about risk distribution in the case of 'unexpected loss', developments such as this would destroy the concept of insurance : "Large scale genetic testing by insurers would effectively eliminate the risks from unexpected losses and the large population of insureds including both healthy and unhealthy individuals. As such, insurance ceases to be insurance."[58]

    Present Regulation Relating To Genetic Discrimination In Insurance

74. As has been discussed in the employment context, it is contended that issues of genetic discrimination would probably, if litigated, fall within the model of the Disability Discrimination Act. Thus the category of the 'asymptomatic ill', would probably fall within the meaning of a disability that , 'may exist in the future', or ' is imputed to a person'.

75. If we consider genetic discrimination issues through the existing 'disability' approach mentioned earlier, then the issues of denial of insurance coverage and the charging of higher premiums are complicated by one vital factor - exemptions in the field of insurance. Under the provisions of s.46 of the Disability Discrimination Act, the law sanctions a particular type of discrimination. In providing insurance and formulating terms and conditions, discrimination on the basis of disability is not unlawful if:

    " - the discrimination is based upon actuarial or statistical data on which it is reasonable to rely and it is reasonable to discriminate considering that data and any other relevant factors; or - in the absence of any actuarial data, the discrimination is reasonable having regard to any other relevant factors."[59]

76. Therefore, within the present regulatory framework of the Disability Discrimination Act, if an individual has a certain genetic formation that is linked to a particular loss (in the case of health insurance - illness or disease, and in the case of life insurance - death), then that person can be treated differently ('discriminated') by insurers by the denial of coverage or charging of higher premiums if it can be shown that there are statistical links between the characteristic and the loss.

77. This type of exemption is problematic. There may be illogical consequences of putting the legality or illegality of discrimination in the hands of statistics. The reason for this is that 'correlation' does not necessarily equate with 'causation': "The frequency of rooster calls at sunrise does not mean that roosters cause the sun to rise."[60]

78. Also, as discussed earlier, the rationale of the exemption is the solvency of the insurance industry through the avoidance of adverse selection. The previous sections have attempted to show that in the case of genetic information, such a justification is tenuous.

79. In the present system of Australian regulation of genomic information with respect to insurance, two important points must be made in relation to two different types of insurance - health insurance and life insurance. The Senate's Legal and Constitutional Legislation Committee, noted that the comparison of the Australian and American health insurance experience may not be appropriate for two main reasons. Firstly, health care in Australia is largely provided by a universal health care system, whereas, a great deal of the health benefits and schemes in the USA are provided as a part of the terms of employment.[61]

80. Also, the ability of insurers to specifically tailor health insurance premiums to the individual is curtailed to some extent by the provisions of the National Health Act 1953 (Cth.). Essentially, the National Health Act provides that private insurers are required to use the 'community rating' principle to determine the level of their premiums.[62] Thus, the individual is protected from the use of genetic information to a certain extent in the case of health insurance, in the sense that an insurer is prohibited from varying the contribution rate of an individual on the basis of perceived risks of the particular individual. This may account for the lack of evidence found by the Senate's Legal and Constitutional Legislation Committee of instances of insurers demanding genetic information from particular individuals.

81. It also important to note that insurance contracts are contracts of 'utmost good faith'. What this entails for insureds is a legal duty of disclosure - a disclosure that bears upon the issue of genetic information. s.21(1) of the Insurance Contracts Act, 1984 (Cth.) states:

    " Subject to this Act , an insured has a duty to disclose to the insurer , before the relevant contract of insurance is entered into, every matter that is known to the insured, being a matter that :
    (a) the insured knows to be a matter relevant to the decision of the insurer whether to accept the risk, and, if so, on what terms; or
    (b) a reasonable person in the circumstances could be expected to know to be a matter so relevant."

82. Therefore, it is arguable that insureds are under a legal duty to disclose to insurers results of existing genetic tests and genetic information that may affect the insurers decision to enter into a contract with the particular individual.

83. Overall, it appears that the present federal regulatory framework envisages the disclosure of genetic information by the insured to the insurers. However, the use to which such information may be put by insurers is limited firstly, by the requirements of the community rating principle in the case of health insurance. And secondly, if it is accepted that individuals with genetic predispositions to disease can utilise the Disability Discrimination Act, insurers can utilise such information in the setting of premiums, only to the extent that there is an actuarial basis for doing so.

84. It is contended that the present schema of federal regulation that bears upon genomic issues in the area of insurance, fails to accommodate the distinct issues that genetic data gives rise to. In allowing exemptions within the anti - discrimination framework on the basis of actuarial data, as provided for in s.46 of the Disability Discrimination Act, the law has failed to recognise that genetic data is of limited predictive value in most cases. It has already been contended that the main justification for exemptions to anti-discrimination legislation in insurance is the notion of adverse selection. I have attempted to challenge this fundamental assumption. I have sought to challenge the notion that there is a justification for the use of genetic data in insurance in order to curtail or deny coverage. From the conceptual discussion of genetic information and insurance, I conclude that there should be an outright prohibition on the use of genetic information by insurers.

    The Genetic Non-Discrimination and Privacy Bill 1998 - The Insurance Provisions

85. As has been discussed earlier, s.17 of the Genetic Non-Discrimination and Privacy Bill provides an outright prohibition of discrimination on the basis of genetic information. However, another provision of the Bill, namely s.19 also bears upon the issue of genetic information and insurance. s19 states:

    "An insurer may request or require or use the genetic information of an individual if the genetic information from a genetic analysis has already been undertaken and a genetic record exists, but the insurers must not :
    (a) terminate, restrict, limit, refuse to renew, or otherwise apply conditions to the coverage of an individual or family member under the policy or plan involved, or restrict the sale of the policy plan to an individual or family member on the basis of any genetic information about a healthy individual or a healthy family member , or on the basis of a request for or receipt of genetic services by an individual or family member or ;
    (b) discriminate against an individuals family in the provision of insurance coverage or;
    (c) require an applicant for insurance coverage, or an individual, or family member who is enrolled under an insurance coverage policy or plan, to be subjected to genetic analysis or to be questioned about genetic information."[63]

86. Therefore under the proposed reforms, insurers would be able to request existing genetic test results, however, insurers would be prohibited from requiring insureds to undergo new genetic tests. s.19 prohibits insurers from restricting insurance coverage to 'healthy individuals' on the basis of any such genetic test results. The definition of 'healthy individual' is not contained in the Bill. It is likely that the term is intended to encompass the 'asymptomatic ill' - that category of individual that carries a genetic composition that may or may not result in a future disease or disability. The problem is, however, that the Genetic Non-Discrimination and Privacy Bill does not take into account the exemption that is presently found in s.46 of the Disability Discrimination Act, a provision which allows insurers to discriminate in the setting of premiums on the basis of actuarial advice - which may include genetic information. The provisions of s.46 of the Disability Discrimination Act and the dual operation of ss 17 and 19 of the Genetic Non-Discrimination and Privacy Bill are in sharp conflict. I have advocated a removal of the exemptions afforded to insurers from anti-discrimination legislation for reasons already discussed. The Genetic Non-Discrimination and Privacy Bill provides a movement towards this goal. However, in order to create a comprehensive schema of genomic protection in the area of insurance, if the genetic Non-Discrimination and Privacy Bill was to be passed, then s.46 of the Disability Discrimination Act should also be repealed.

87. The insurance provisions in the Genetic Non-Discrimination and Privacy Bill do recognise to some extent, the distinctive nature of genetic information. The prohibitions on the use of genetic information as a means of limiting insurance coverage to 'healthy individuals' also extends to their families. So in this sense, the bill recognises that genomic matter extends beyond the unit of the 'individual'. Genetic information is information that an individual shares with his or her family, as well as the rest of humankind. The bill therefore provides an important step towards a legal framework that both understands the reason that genetic data causes particular concerns in the area of insurance, as well as educates as to the reason that genetic information is sensitive information.

88. Although the bill would provide a recognition of the 'shared' context of genomic matter in the insurance context, it must be remembered that the requirements of 'consent' and 'authorisation' that were discussed in the employment context also apply to the insurance context. As such, the bill, whilst attempting to view genetic issues within a new framework is still partially embedded in the liberal legal world where the individual is the subject. Individual consent is a flawed concept when the information disclosed relates to a group of individuals rather than the particular individual per se.

89. The main failure of the bill, however, in terms of its attempts to regulate the use of genetic information by insurers, is in its ineptitude in explicitly challenging the assumptions that attempt to legitimate discrimination in insurance on the basis of genetic data.

    The Human Genome and Medical Research - The Issue Of Property Rights

90. In this section I hope to briefly canvass some of the issues surrounding genomic matter and the interests of potential human tissue donors vis-a-vis medical researchers. Thus, at the outset it should be noted that the discussion is not regarding the application of patent law to genetic profiling - the issues in that area are predominantly between medical researchers themselves. Rather , the analysis of medical research and genomic matter discussed in this section is about the position of the 'individual'. The analysis is warranted since many of the same themes recur in the area of medical research and the genome , that have been discussed in the context of employment and insurance - namely that the concept of the 'individual' that lies at the core of liberal legal methodology is a difficult concept to incorporate within a schema of genomic regulation.

91. This discussion is consistent with one of the main themes of this paper, namely, that genetic information is the 'shared' information of humanity, and as such, legal principles related to the genome should recognise and proclaim this fact. The perspective taken is to discuss how the discourse of 'property' has been utilised in the USA in marking the balance between rights of the individual and incentives for medical research. This is of relevance to Australian regulatory proposals since the issues of consent and authorisation, privacy and the distinct nature of the genome are brought into sharp relief.

    Genomic Issues In Medical Research - Moore v Regents Of The University of California

92. The debate over the proprietary aspects of genomic matter in the field of medical research largely arose in response to the US case of Moore v Regents of the University of California.[64] The issues at stake are difficult to analyse in abstract terms , and as such, a discussion of Moore will assist in illuminating these matters. Moore v Regents of the University California essentially concerned the status of excised bodily tissue in terms of the proprietary claims upon them.

93. In the late 1970's, Moore was treated for hairy-cell leukemia at the University of California. A number of procedures were undertaken upon Moore, including a splenectomy, under the guidance of a Dr. David Golde. Lin has outlined that : "Before the operation, Golde was 'aware that certain blood products and blood components were of great value in a number of commercial and scientific efforts' and that access to a patient whose blood contained these substances would provide competitive, commercial and scientific advantages."[65] Moore consented to the splenectomy, unaware that Golde was to use the data for research purposes. Part of an 'elaborate and complicated' consent form that was signed by Moore included a waiver of all proprietary rights in the cell line derived from his spleen. in 1984, Golde obtained a patent for an "MO" cell line that he had developed , a patent potentially worth millions in the marketplace of biotechnology.

94. Moore sued in a number of causes of action, including 'conversion of bodily property'. Moore failed in his action, the California Supreme Court holding that there was no issue of conversion : " ..[h]e [Moore] abandoned them [his cells] when the doctors removed them form his body."[66]

95. Lin has interpreted the Moore Case as standing for the proposition that once cells and body tissue are removed from a patient's body, any proprietary interest that may inhere in the patient and attaching to genomic matter therein, is extinguished - effectively allowing the unmitigated use of bodily tissue without financial recompense. Moore is one of the only cases that has dealt with proprietary issues between tissue donors and researchers.

    The US Legislative Response To Moore

96. In the USA it appears that the legislative response to Moore has largely been guided by the view that the case: "...[f]ails to adequately protect a patient-donor's individual liberties and further fails to provide patients with any incentive to allow research utilising their tissue."[67]

97. There have been a variety of US legislative measures to clarify the property rights in genomic matter in relation to donors and medical researchers. These legislative measures have been enacted federally and in various state jurisdictions. In the USA, the Federal Genetic Privacy and Non-Discrimination Act, (1995) emphatically clarifies the property issue at stake. s.104(a) of the Act grants a federal property interest in an individual's own genetic material, which includes DNA and tissue samples.[68]

98. It is worth comparing this federal provision with that created by the state of New Jersey's Genetic Privacy Act (1996).[69] The New Jersey legislation provides a private property right in a person's genetic information, which is arguably a broader concept than genetic material. Both models establish a cause of action to enable aggrieved individuals to seek civil remedies against an offender that attempts to violate these newly created property rights.[70] The implications of this recognition of a private property interest in genetic material and information shall be discussed shortly, after considering the Australian context.

    Present Medical Research In Australia - Self-regulation and The Proposed Reforms

99. In Australia, medical research is largely self-regulated, under the umbrella of the National Health and Medical Research Council (NHMRC).[71] The NHMRC has established a protocol for medical research, and thus the scheme is largely dictated by 'professional responsibility'. Elements of the protocol include:

    "* the consent of subjects to the use of their information should normally be obtained except where: obtaining consent is likely to cause unnecessary anxiety or to prejudice the scientific value of the research; and not obtaining consent will not disadvantage the subjects;
    * access to medical records should normally be restricted to medically qualified investigators and research associates responsible to them;
    * investigators and their associates should preserve the confidentiality of information about research subjects. Records must be kept at least as secure as they were in the source from which they were obtained;
    * the use of confidential personal information should not be allowed to cause material, emotional or other disadvantage to any individual."[72]

100. The Genetic Non-Discrimination and Privacy Bill (1998) has provided the first federal attempt at regulation of genetic data in medical research, in the context of the proprietary balance between researchers and donors. The issues at stake were succinctly stated by Senator Natasha Stott Despoja in her Second Reading speech:

     "The effect of this decision [the Moore case] was to say that John did not own his own bodily material . This does not seem to be a satisfactory result and by extension means that bodily material , such as blood and DNA, used to obtain genetic information becomes the property of the tester. This is unfair. A patient with their unique biology should not be removed to the status of an interesting source of wealth , and their body and its materials should not be owned by another."[73]

101. The Australian proposals for reform as expressed in the Genetic Non-Discrimination and Privacy Bill differ from the American models in the sense that they do not explicitly provide a private property right in genomic matter per se. Rather, the issues are spoken of in terms of 'authorisation' and 'consent'. For example, s.16(1)(f) provides that authorisation : " must include provisions that permit the individual to consent to....(ii) commercial use of the DNA sample , with a waiver of , or a provision for , economic benefit to the individual."[74] The schema proposes that medical researchers who want to use genetic information from DNA samples must obtain specific consent from the individual. s.12 provides : "(1) Except as otherwise provided by law, a person may collect a DNA sample from an individual for genetic analysis, only if the person: (a) obtains the written authorisation of the individual in accordance with section 16; and (b) provides the information to the individual in accordance with section 15; and (c) provides the notice of rights and assurances in accordance with section 14; and (d) collects the sample in accordance with the authorisation and notice of rights and assurances."[75]

102. Thus, it can be seen that in the process of authorisation proposed and buttressed by s.16(1)(f) , the bill attempts to address the main concerns in medical research of economic benefit accruing to the individual and enhancing the knowledge of how genomic matter is to be used after samples are taken. Although the Australian reform proposals are not couched in the language of 'property', I argue that the schema provides a de facto property right - an elaboration of this argument follows shortly.

     Is A Property Discourse Appropriate For Genetic Information ?

103. My main contention is that the Genetic Non-Discrimination and Privacy Bill's divergence form the US experience in not, at least formally, speaking in the discourse of property is appropriate in considering the status of genetic matter. The discourse of property, particularly in the nineteenth century, has been a liberal discourse of individual freedoms and rights , contrasted against the claims of the all-encompassing state. Such themes are perhaps best expressed by Vandervelde:

     "All of the important problems in a liberal legal system can be stated as a choice between state power and individual freedom.....[P]roperty , and its counterpart, sovereignty , have been understood as generic terms for, respectively, the collection of freedoms held by the individual and the collection of freedoms held by the state. In very real terms, the concept of property has marked the boundaries of individual freedom and the limits of state power. Thus the choice between state power and individual freedom in particular cases repeatedly has been stated in legal terms as the decision whether property exists."[76]

104. Arguments such as that presented by Vandervelde assume that there is a sharp public/private dichotomy of which the category of 'property' marks the boundary. There is great difficulty however, in applying this particular conceptual framework of property to genetic information. The predominant problem is that in the context of the human genome, what is 'possessed' by one is possessed by another - for example, family members, and more fundamentally, fellow human beings. Thus decisions made by an individual regarding the use of genomic matter in medical research can potentially affect others. As such, current ideas about property in liberal legal discourse are inappropriate in their application to genetic information and data. The distinct nature of genetic information fundamentally undermines the concept of atomistic, rights-bearing individuals that is at the core of modern conceptions of property, as exemplified by Vandervelde.

105. Internationally, there have been suggestions that genetic information should be shared as a form of 'familial' property amongst family members who have a legitimate common interest in that information.[77] Arguably, such an approach is more suited to genetic matter, but this approach requires a rethinking of current ideas and the current framework within which property discourse takes place.

106. Whilst the Australian legislative proposals already discussed do not speak in the language of 'property', it can be seen that the ramifications of the provisions may, for all intents and purposes, effectively create 'quasi' property rights. The reason for this is the requirement of individual authorisation, such as that discussed in s.12. The effect of these authorisation and consent provisions already discussed, would seem to be to allow pecuniary benefits to accrue to the donor of samples , and allow the control of the use to which such samples are put. This is the same effect that the USA legislation has had. In that sense, the bill could be said to grant a quasi-property right. These notions of consent and authorisation are based upon the 'individual'. What is required is a new paradigm - a framework where genomic issues , including medical research issues are spoken of in terms of familial relations and relations of humankind - a discourse of 'community'.

     Concluding Remarks

107. This paper has considered the nature of genetic information and the potential difficulties that genomic matter provides in the areas of employment, insurance and medical research. Presently, the human genome is not treated within a comprehensive schema of regulation at the federal level. It has been shown that genetic discrimination in employment and insurance cannot be justified. To the extent that the model of disability discrimination provides some redress for the asymptomatic ill, it has been shown that the model was not designed for genetic issues. As such, an outright prohibition of genetic discrimination should be enacted. The Genetic Non-Discrimination and Privacy Bill 1998 (Cth.) provides one possible avenue to create such a schema, however the proposed legislation, through its emphasis on individual consent and authorisation fails to appreciate that genetic information is 'shared' information. As such, in providing for the 'individual' as the reference point from which employers, insurers and medical researchers can have access to genetic information, the proposed legislation does not break free from the straightjacket of liberal legal discourse. Such a rethinking of the authorisation and consent framework can only be achieved through an understanding of the relational nature of human beings.

Notes

[1] UNESCO Universal Declaration on the Human Genome and Human Rights http://www.unesco.org/ibc/uk/genome/projet/index.html

[2] Billings PR (1992), " The Scientific Basis Of The 'Genetic Revolution' : A Selective Review" in The Genome, Ethics and the Law : Issues In Genetic Testing 23, 26.

[3] The Genetic Non-Discrimination and Privacy Bill, 1998, First Reading Speech. http://search.aph.gov.au/search/ParlInfo.ASP?action=browse&Path=Legislation/Current+Bills+by+Title/Genetic+Privacy+and+Non-discrimination+Bill+1998&Start=3&crV#top 12th October 1999.

[4] Parliament of Australia : Senate : Genetic Privacy Bill Recommendations, 1st April 1999, 23rd August 1999.

[5] 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.

[6] Stott-Despoja N (1999), Genetic Policy Papers, <http://www.democrats.org.au>, 23rd August 1999.

[7] Kirby MD (1994) , "Man's Freedom and the Human Genome" in The Human Genome Project : Legal Aspects , Vol 1 , Fundacion BBV 265 at 267-8.

[8] Gaulding J (1995), "Race, Sex, and Genetic Discrimination in Insurance : What's Fair?", 80 Cornell Law Review 1646-1694 at 1664.

[9] Brown ME (1991), " Insurers and Genetic Testing :Shopping For That Perfect Pair Of Genes", 40 Drake Law Review 121-148 at 123.

[10] ibid. at 123.

[11] Heerey J in the Federal Court case of Genetics Institute, Inc v Kirin-Amgen (1998) AIPC 91-429.

[12] Gaulding (1995) op cit at 1664.

[13] The Genetic Non-Discrimination and Privacy Bill, 1998, First Reading Speech. 12th October 1999.

[14] Brown (1991) op cit at 123.

[15] Shulman S (1995), "Preventing Genetic Discrimination", 98 Technology Review 5, at 16(3).

[16] "Genetic Testing - The Privacy Issues", (1996) 3 Privacy Law and Policy Reporter 85 at 85.

[17] ibid. at 85.

[18] Meaning of Discrimination, Australian and New Zealand Equal Opportunity and Practice, CCH 1999, 5135-6. Extracted from A. Parashar (ed.) LAW 411 Discrimination and the Law Unit Materials, Volume 2, 1999, Macquarie University, NSW, Australia at 1.

[19] Sternberg S (1996), "Genetic Discrimination : A Prejudice Is Born", 150 Science News 17 at 262.

[20] ibid. at 262.

[21] Chapter 4, Paragraph 4.52 in, Parliament of Australia : Senate : Genetic Privacy Bill Recommendations, 1st April 1999; 23rd August 1999.

[22] Griffin M (1996), " Genetics : The New Legal Frontier" , 31 Australian Lawyer 8, September 1996.

[23] Stott-Despoja N (1999), Genetic Policy Papers, <http://www.democrats.org.au>, 23rd August 1999.

[24] Taylor S (1998), "A Case Study Of Genetic Discrimination : Social Work and Advocacy Within A New Context", 51 Australian Social Work 4, 51-57.

[25] Brown (1991) op cit at 123.

[26] Taylor (1998) op cit at 52.

[27] ibid. at 53.

[28] ibid. at 55.

[29] ibid. at 55.

[30] Billings (1992) op cit at 23.

[31] Saucer C (1997) , "Do the Right Thing - Laws Designed To End Prejudices In Insurance", 98 Best's Review - Property Casualty Insurance Edition 7, Nov 1997, at 108(3).

[32] Australian and New Zealand Equal Opportunity and Practice, CCH 1999, 5135-6.

[33] Leeb-du Toit R (1998), "Genetic Databanks For The People", Law and Technology , September 1998, 3-4 at 4.

[34] UNESCO, Universal Declaration on the Human Genome and Human Rights, 1997. <http://www.unesco.org/ibc/uk/genome/projet/index.html> , 21st August 1999.

[35] The Genetic Non-Discrimination and Privacy Bill, 1998, First Reading Speech; 12th October 1999.

[36] ibid. , The Genetic Non-Discrimination and Privacy Bill 1998, First Reading Speech.

[37] ibid. , The Genetic Non-Discrimination and Privacy Bill 1998, First Reading Speech.

[38] Leeb-du Toit (1998) op cit at 4.

[39] ibid. at 4.

[40] Beckwith J and Alper S, (1998), " Reconsidering Genetic Discrimination Legislation", 26 Journal of Law, Medicine and Ethics 3 at 205.

[41] Kaveny MC (1999), "Jurisprudence and Genetics", 60 Theological Studies 1 at 135.

[42] ibid. at 135.

[43] Cotterrell R (1984) , The Sociology of Law: An Introduction, Butterworths, 1984, 74-76, 104-125.

[44] Shulman (1995) op cit at 16(3)

[45] Low L, King S, and Wilkie T (1998), "Genetic Discrimination in Life Insurance : Empirical Evidence From A Cross-Sectional Survey of Genetic Support Groups in the United Kingdom", 317 British Medical Journal 1632-1635. Obtained from the eBMJ website : <http://www.bmj.com/cgi/content/full/317/7173/1632>, 21st August 1999.

[46] ibid.

[47] Chapter 4, Paragraph 4.55 in, Parliament of Australia : Senate : Genetic Privacy Bill Recommendations, 1st April 1999.

[48] Brown M (1991) op cit at 130.

[49] Gaulding (1995) op cit at 1651.

[50] ibid. at 1651.

[51] Adverse selection refers to a situation where those who expect their losses to be lower than the losses of others in an insurance pool will tend to leave the pool or refrain from joining it, while insureds who expect higher losses will tend to remain in the pool or join it in greater numbers.

[52] Gaulding (1995) op cit at 1666.

[53] Richards T (1996), "End To Insurers Using Genetic Data Urged", 313 British Medical Journal 7061 (Oct 5 , 1996) at 838(1).

[54] Brown (1991) op cit at 145.

[55] Richards (1996) op cit at 838(1).

[56] Shulman (1995) op cit at 16(3).

[57] Sternberg (1996) op cit at 262.

[58] Brown (1991) op cit at 135-136.

[59] Australian and New Zealand Equal Opportunity and Practice, CCH 1999, 5135-6.

[60] Gaulding (1995) op cit at 1658.

[61] Chapter 4, Paragraph 4.55 in, Parliament of Australia : Senate : Genetic Privacy Bill Recommendations, 1st April 1999.

[62] ibid. Chapter 4, Paragraph 4.55.

[63] The Genetic Non-Discrimination and Privacy Bill, 1998, First Reading Speech.

[64] This case has been discussed at length in : Lin M (1996), "Conferring A Federal Property Right In Genetic Material : Stepping Into the Future With the Genetic Privacy Act", 22 American Journal of Law and Medicine 1, 109-134.

[65] ibid. at 116.

[66] ibid. at 118.

[67] ibid. at 109.

[68] ibid. at 121.

[69] Charatan F (1996) " New Jersey Passes Genetic Privacy Bill", 313 British Medical Journal 73. Obtained from the website <http://www.bmj.com/cgi/content/full/313/7049/71>, 21st August 1999.

[70] Lin (1996) op cit at 129.

[71] Chapter 4, Paragraph 4.34, in, Parliament of Australia : Senate : Genetic Privacy Bill Recommendations, 1st April 1999.

[72] "Genetic Testing - The Privacy Issues", (1996) 3 Privacy Law and Policy Reporter 85 at 85.

[73] Stott-Despoja N (1999), Genetic Policy Papers, <http://www.democrats.org.au>, 23rd August 1999.

[74] The Genetic Non-Discrimination and Privacy Bill, 1998, First Reading Speech.

[75] ibid.

[76] Vandervelde K (1980), " The New Property of the Nineteenth Century : The Development of the Modern Concept of Property" 29 Buffalo Law Review 325 at 326.

[77] Wersz DC et al (eds.), (1995) , Guidelines on Ethical Issues in Medical Genetics and the Provision of Genetic Services, World Health Organisation at 7.2.2.