Genetic Privacy Bill

Chapter 4

PRIVACY AND DISCRIMINATION ISSUES

Introduction

4.1 The special character of genetic information generates several privacy and discrimination issues that affect the areas of health care, medical research, employment, insurance and forensic investigations. The differing natures of these areas mean that the privacy and discrimination issues that may arise vary. This chapter considers some of the issues raised in relation to these areas, some of which are not covered by the proposed legislation.

4.2 The consideration of genetic privacy issues focuses on the availability of personal information, the control of the collection such information and access to it. The consideration of genetic discrimination issues focuses on the use of such information.

Consent

4.3 The issue of consent is relevant to both genetic privacy and genetic discrimination.

4.4 When consent to a genetic test is sought, the individual should be made aware of the nature and significance of the test. The consent should specify also the scope of the test as well as any intended future storage or use of the sample. The vulnerability of those with mental disabilities should also be recognised and measures implemented to ensure that researchers, who may have a special interest in them by reason of their disability, do not exploit them. [1]

4.5 The committee notes that the law already imposes a general requirement of consent, which requires that a person be informed in broad terms of a procedure and any relevant risks. [2] It is considered that there is no general legal obligation to obtain the more detailed consent arguably needed for genetic tests. However, it is acknowledged that there are several legal definitions of consent.

Conclusions

4.6 The committee therefore supports the general principle that, except in limited law enforcement applications (which are discussed below), genetic or tissue samples should only be collected with the informed consent of the individual concerned. Subsequent access to and use of that information should also be limited to the terms of the consent given. There should also be defined requirements to gaining informed consent.

Health care

4.7 Emerging genetic technology has significant implications for health care. As the submission of the Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia explains:

Genetic disorders fall into two categories: single gene disorders and polygenic disorders involving abnormalities in more than one gene and major influences from environmental/lifestyle factors disorders (also sometimes referred to as multifactorial diseases). Serious monogenic (single gene) disorders are relatively rare. Examples include Huntington's disease, cystic fibrosis and haemophilia. Even where a defective gene is present, the person may, for many years, be asymptomatic. This is the case with late onset conditions such as Huntington's disease. Polygenic disorders are much more common. Examples include some forms of cancer and coronary heart disease, diabetes, schizophrenia, depression, alcoholism and dementia.

Genetic tests are already available for a range of diseases arising from single gene abnormalities, including cystic fibrosis, duchenne muscular dystrophy and Huntington's disease. The amount of information about genetics is increasing and there have been significant technological developments regarding gene sequencing and equipment which is likely to make the current testing quicker and cheaper, with a wider spectrum of tests available. It is envisaged that it may be possible within the next few years to analyse a vast array of information, previously only available through single tests, and to have this information transferred to a microchip. These are, however, only predictions and there are obviously commercial realities of patenting and questions of cost benefit to be taken into account. [3]

4.8 It is also important to distinguish the several types of genetic testing carried out for health care purposes. Where diagnostic genetic testing is carried out on symptomatic patients, it does not differ substantially from any other diagnostic tests and generates few privacy or discrimination issues. [4] These can be contrasted with predictive or carrier tests to determine whether a person has a genetic predisposition to a disease or condition, or is a carrier of such a condition.

Privacy issues

4.9 There are several privacy issues in the area of health care. Firstly, as the Privacy Commissioner points out [5], as a consequence of the increasing complexity of health care, there is a move away from single medical practitioners towards larger teams of health care professionals who may all legitimately have access to a patient's medical records. This wider access creates new challenges to individual privacy in relation to all health records, however, genetic information is particularly sensitive, especially results of predictive or carrier tests. Patients therefore have a strong interest both in having access to such information and in controlling the access of others to it.

4.10 A related issue involves obligations on patients or medical practitioners to disclose genetic information to third parties. If a test reveals some genetic disease or condition, this information may be directly relevant to other members of the tested person's family. Should there be any positive obligation to pass on such information to those potentially affected? Where a person refuses to disclose such information, when would it be permissible for a medical practitioner to do so? There are likely to be scenarios in which a person's right to privacy conflicts directly with a wider duty to inform relatives of risks to their health.

4.11 Tangential to privacy and the right to control access to, and dissemination of, personal information, is the right for an individual not to know or be made aware of certain information. At issue is the possible creation of obligations on medical practitioners and/or individuals to inform relatives of test results versus the right of potential recipients of the information to remain in ignorance in certain situations. An example of the latter is the situation of a test result revealing the likely onset of an untreatable condition such as Huntington's disease.

4.12 Another issue involves information contained in a collection of tissue samples originally collected for some other purpose, when later access is sought to the collection for the purpose of genetic analysis. [6] Several submissions [7] drew to the committee's attention the longstanding practice of taking blood samples from all newborn babies as part of newborn screening programs. [8] The samples, known as “Guthrie spots” are stored on cards, and all babies born in Australia are tested by the programs which means that, in NSW for example, cards are now in storage for persons up to the age of 28 years. [9] These large collections have become inadvertent DNA sample banks, and these submissions pointed to the need for appropriate controls over access to and use of the samples. [10] This is confirmed by the experience in the USA where there is an increasing demand from researchers for access to public collections from newborn screening programs. [11]

Ethics issues

4.13 The use of genetic information by prospective parents also raises an ethical issue. Technology already enables prospective parents to conduct some pre-natal tests that reveal certain characteristics of the foetus. If the tests reveal potential defects, some prospective parents have elected to terminate the pregnancy. [12] As technology advances, it is likely that the nature and detail of such information will increase. To what extent should prospective parents be able to terminate a pregnancy on the basis of the disabilities or other perceived “shortcomings” of a foetus? [13] Are there any limits to the categories of information that parents may receive or use? At the very least there will be an increased need for genetic counselling to ensure prospective parents are adequately informed and can therefore make appropriate decisions. [14]

Current regulation

4.14 There is currently limited privacy protection of medical information. The Privacy Commissioner in her submission stated:

For some time I have been concerned about the state of protections for Australia's personal health information. Across Australia there are both gaps and a lack of consistency in the protections currently applying. Some protections exist, but they are neither comprehensive nor consistent. [15]

4.15 The Information Privacy Principles in section 14 of the Commonwealth Privacy Act 1988 cover the operations of Commonwealth and ACT government departments and agencies and govern the way in which personal information about individuals is collected, stored, used and disclosed by such departments and agencies. In December 1997, the ACT Government enacted the Health Records (Privacy and Access) Act 1997 which covers personal health information whether it is held in the private or public sector, providing a set of protections comparable to those in the federal Privacy Act. There is no equivalent legislation outside the ACT, although the NSW and Victorian governments are considering broadly similar privacy legislation. [16] Freedom of Information (FOI) legislation in all jurisdictions apart from the Northern Territory allows health consumers to access and make corrections to medical records held in the public sector, however, the private sector is not covered by FOI legislation.

4.16 Few protections are afforded by common law. The recent High Court decision in Breen v Williams [17] reaffirmed an obligation of confidentiality on health care providers to not disclose a patient's records to a third party but did not recognise any obligation under common law on the creator and holder of medical records to grant access to them to the patient. It can be argued that this is a significant gap because individuals cannot adequately control access to, or the uses of, their personal information if they are themselves denied access. In their judgment, Gaudron and McHugh JJ stated that “changes in the law that cannot logically or analogically be related to existing common law rules and principles are the province of the legislature” [18], placing the onus on Parliament to make any changes in this area.

4.17 The committee also notes the existence of a number of self-regulatory controls in this area, for example, the Australian Medical Association Code of Ethics (1997) and the draft AMA Position Statement on Genetic Issues 1998. [19]

Conclusions

4.18 There are significant privacy and ethical issues in relation to access to, and control over, personal medical records containing genetic information. The committee does not consider current protections, nor those proposed by the bill, to be adequate, particularly in relation to the private sector. The committee believes that the combination of advances in the availability of genetic information and advances in the information technology systems to store, process and transfer that information, increases the potential for abuses of personal privacy. However, the privacy rights of individuals will need to be balanced against the practical considerations concerning the extent of the measures that will be required to protect privacy and the associated costs.

4.19 The committee notes the intention of the bill to broadly cover the sources of genetic information which should be afforded privacy protection, however, it considers that the information contained in the collections associated with newborn screening programs requires additional regulation to safeguard the privacy rights of persons whose samples are in such collections.

Donor conception schemes

4.20 The submission of the Donor Conception Support Group of Australia Inc. raised a further issue. The submission points out that, at the very least, approximately 20,000 Australians have been conceived via donor conception schemes [20] and suggests that access to donors' genetic information also needs to be taken into account.

4.21 As stated above, genetic information about an individual can be significant to genetic relatives by identifying family histories of illness or susceptibility to genetic conditions. Children born by donor conception currently do not have guaranteed access to their full genetic information – those born of donor egg or sperm only know half of their genetic information and those born by donated embryos may know none. [21]

4.22 The Donor Conception Support Group of Australia Inc. argues that:

There must be a provision in legislation for genetic information of an individual who was a gamete donor to be given to the infertility clinic at which he or she donated so that it can be shared with the donor offspring and/or their parents depending on age. … One Victorian sperm donor had found out years after he donated that he had a family history of bowel cancer. He contacted the clinic at which he donated to let them know so that they could pass on this information to the recipient families. He does not know if the clinic did this. [22]

Conclusions

4.23 The committee notes the limited legislation in Australia governing donor conception and the management of records of donors and their genetic information, and recognises the need for more comprehensive legislation in this area.

Medical research

4.24 Medical research is central to developments in genetic technology. The current bill seeks to address several key issues raised by this area, particularly in regard to research involving genetic analysis and disclosure of genetic information.

Privacy issues

4.25 As with any genetic testing, research has the potential to reveal information of a personal nature that an individual has a right to keep confidential. Equally, research may reveal previously unknown information that an individual or a family did not want, or intend to become known, such as the existence or absence of a genetic relationship. [23]

4.26 A further privacy consideration stems from the use of “record linkage” as a research tool. Record linkage involves the combination of data from disparate data sources (often collected for other purposes) by matching on individual identifiers, to produce a new data set that contains more accurate details about each individual. [24]

Ownership issues

4.27 The bill seeks to legislate a solution to the issue of ownership of personal genetic information. In her second reading speech [25], Senator Stott Despoja referred to the example of the US case of Moore v Regents of the University of California, which raised public concern about scientists deriving profits from tissue research without telling the person whose tissue is used during the research. [26]

4.28 In an appendix to Submission 19, Professor Chalmers and Dr Nicol note the impact of increasing commercialisation on the culture of research, particularly private research. Such research is very expensive and commercial research entities often seek to ensure that the law protects their investment by means of patents, the usual protection for investment in new technologies. However, patents may not be appropriate in the area of human genetics. [27]

4.29 Some alternatives to permitting the patenting of human genes are to:

• prohibit ownership, on the grounds that genetic information may be regarded as the common heritage of the human species [28]; or
• recognise the individual's ownership of his or her own genetic material, as proposed by the bill.

4.30 However, Mr Michael Fleming in his submission argues that:

… the Bill, for effective purposes, establishes a private property right in information derived from a human DNA sample. Put like this, it can be seen that this Bill would mark an enormous departure from traditional legal principles. It is one thing to give a right closely analogous to a property right to a person's body, or even to a sample of tissue taken from it. … It is altogether a different matter to give a right of property to the information, simpliciter, derived from the study of the body or the sample. [29]

4.31 The submission from SmithKline Beecham International argues against an individual having a property right in a sample:

It is an issue whether there is any moral or other justification for a human having a financial interest in the outcome of the use of a DNA sample as suggested by the Bill in section 16(1)(f)(i) and (ii). If the analysis and manipulation of the DNA sample finally results in the production of some beneficial therapeutic outcome for the benefit of mankind as a whole, it is questionable whether an individual should have this potential economic interest. [30]

4.32 In considering this issue of the rights of ownership, the committee also notes the implications of the Human Genome Project for indigenous communities:

… [the project] aims to map the genetic structure of small racial subgroups. Part of the motivation for this project lies in the belief that there may be valuable properties to be found in the genome of small divergent groups which are not represented in larger populations. Some groups (reportedly including some groups of Australian aborigines) have, however, expressed reservations about this project, seeing it as another form of exploitation. [31]

4.33 For this reason, there have been suggestions that there is a need for legislation to recognise group interests in the disclosure of results of DNA analysis and group property rights. [32]

Current regulation

4.34 Under current Australian law, medical research is self-regulated. The principle regulatory mechanism is the National Health and Medical Research Council (NHMRC) established by the National Health and Medical Research Council Act 1992, and its subsidiary bodies, the Australian Health Ethics Committee (AHEC) and the Institutional Ethical Committees (IECs). [33]

4.35 The AHEC is responsible for the development of NHMRC guidelines for the conduct of medical research involving humans. Members of that committee must include persons with a knowledge of: the ethics of medical research; law; philosophy; religion; medical research; public health research; social science research; clinical medical practice; nursing or allied health practices; regulation of the medical profession; health consumer issues; and a person with understanding of the concerns of people with a disability [34]. Under the Act, there must be two stages of public consultation to ensure adequate public input into the development of guidelines. [35]

4.36 The IECs, of which there are approximately 200, are established by institutions to assess applications for research grants. They must:

… be composed of men and women reflecting different age groups including a person not associated with the institution; a minister of religion; a lawyer; a medical graduate with research experience; and a lay woman and a lay man. [36]

4.37 According to evidence received, all research proposals in Australia, whether or not undertaken with NHMRC funds, must be approved by IECs compliant with NHMRC guidelines before the research projects can be undertaken. [37] Part 8 of the Act also provides for the establishment of a commissioner of complaints, and anyone “whose interests are affected” may make a formal complaint provided that their grounds for complaint fall within section 58 of the Act.

4.38 The committee notes that the AHEC has established a genetics working group and that one of its tasks is to prepare guidelines for health professionals, researchers and others in relation to acquisition, storage, access and use of genetic information. The committee also notes that, in accordance with Article 23 of the UNESCO Declaration on the human genome and human rights, the AHEC is disseminating information about the declaration to all IECs. [38]

Conclusions

4.39 The committee recognises that the area of medical research generates complex issues, in relation to the competing interests of researchers and pharmaceutical companies, indigenous groups, and individuals. There are legitimate interests on all sides and regulation is needed to clearly enunciate the policy position that is to be adopted and to ensure that justice is done to individuals and groups of persons who may otherwise be commercially exploited. From the perspective of public policy, it is also desirable that a lack of regulation does not prompt individuals and groups of persons to refuse to participate in research because their interests are not recognised by the law.

4.40 Nevertheless, the committee considers that, in general, medical research in Australia is well regulated and that adequate safeguards exist to ensure that research is conducted in an appropriate way, although the extent to which private sector funded research is covered by NHMRC rules and guidelines is not clear.

4.41 The committee also acknowledges that although the bill seeks to deal with the relevant issues, several of these issues, raised in the submissions, require further consideration and consultation: in particular, ownership of genetic material, and ownership of information derived from such material; and recognition of group rights.

Employment

4.42 Access to genetic information by employers and the uses of such information raise several privacy and discrimination issues which have already attracted attention in the United Kingdom, the United States and Europe. [39]

4.43 Genetic testing in the workplace may be undertaken [40]:

• for the purposes of diagnosis, ie the diagnostic testing of injured or ill workers to determine the nature of their illness or injury;
• on an ongoing basis amongst workers exposed to industrial hazards such as toxic chemicals or radiation, in order to assess whether there has been any genetic deterioration as a result of that exposure – this form of genetic testing is referred to as “genetic monitoring” [41];
• for the purpose of excluding high risk persons from the workforce – this is the more controversial use of genetic test information and is often referred to as “genetic screening”.

4.44 The committee acknowledges that there are legitimate justifications for employers to have access to existing genetic information in relation to employees or job applicants. The law currently permits employers to require applicants to undergo medical, aptitude or psychological testing, and it can be argued that genetic testing is not materially different. [42] Similarly it is argued that employers may have an obligation to use genetic information to exclude from the workplace employees who, by reason of some genetic condition, may threaten the safety of co-workers and members of the public or be at greater personal risk. [43]

4.45 Nonetheless, the committee considers that there are strong reasons for protecting employees against unregulated genetic testing or access to their genetic information. From a public policy perspective, the committee is also concerned that the ability of employers to use genetic information should not undermine employers' ultimate responsibility to provide a safe workplace. [44]

Discrimination issues

4.46 Employers may use the genetic information to unfairly discriminate against employees or job applicants based on incorrect assumptions about that genetic information. If this were to occur on a broad scale, it could lead to the creation of a “genetic underclass” of people who are branded as unfit for employment. [45] In its submission, the ACT Government also pointed to the indirect discrimination that may occur:

… when a rule, practice or policy which on its face appears to be neutral in effect has a disproportionate impact on the group of which the person in question is a member. [46]

4.47 Equally, employers may positively discriminate by seeking out employees who are considered to possess desirable traits. This may increasingly become an issue as technological advances expand linkages between certain genes and perceived characteristics such as criminality or intelligence, or in favour of certain ethnic groups. [47]

Privacy issues

4.48 The committee also recognises that there are also privacy concerns implicit in pre-employment testing.

4.49 Requiring an applicant to undergo genetic testing or to provide existing genetic test results gives a prospective employer access to intimate health information. If the applicant is unsuccessful, there is no contractual relationship with the prospective employer, whose use of the information, under existing law, is not subject to any constraints. The information may be of little interest to the employer. However, there is also the potential that the prospective employer may share the information with associated firms or other firms in the same industry. The committee notes the intrusiveness of such practices and the underlying powerlessness of unsuccessful applicants to prevent such occurrences.

4.50 The requirement that an applicant undergo genetic testing may present the individual with information which he or she may not wish to possess, thus threatening the individual's privacy. Although the requirement to undergo conventional medical tests may also do this, “genetic testing imposes special psychological burdens because of its ability to identify genetic characteristics in people who have exhibited no physical signs and to predict the onset of incurable conditions”. [48]

Current regulation

4.51 On the evidence presented to the committee it does not appear that existing industrial relations, privacy and anti-discrimination legislation provides adequate protection for employees against the issues outlined above. [49]

Conclusions

4.52 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. Although the bill prohibits discrimination by potential employers, and provides for individuals to make privacy and discrimination complaints, it does not fully address the issues covered in paragraphs 4.43 – 4.50.

4.53 The committee therefore considers it necessary for further legislation to be developed to safeguard privacy rights and to address discrimination concerns in this area.

Insurance

4.54 Three major issues arise in relation to insurance:

• should insurers be permitted to discriminate on the basis of genetic information?
• should applicants be required to disclose the results of existing tests to insurers?
• should insurers be permitted to require applicants for insurance to undergo genetic testing?

4.55 The committee notes the need to distinguish between health insurance and other types of insurance such as life and disability insurance. Under the current arrangements for health care in Australia, the use of genetic test information does not give rise to discrimination issues in relation to health insurance. This is because Australia has a universal public health care system (Medicare), and also, under the National Health Act 1953, private insurers are required to use the “community rating” principle to determine the levels of their premiums. This means that private insurers cannot vary contribution rates in the light of the perceived risk of a particular individual (although they can impose a waiting period before benefits become payable), nor can they deny health cover to a person on the basis of his or her medical history. It may therefore not always be appropriate to compare the situation in Australia with that in the US where access to health cover may be at risk if an insurer considers that genetic test information discloses an unacceptable risk. [50]

Discrimination by insurers on the basis of genetic information

4.56 For the purposes of other insurance such as life, disability or income protection insurance, the question remains whether insurers should be permitted to discriminate on the basis of genetic information. The basis of insurance is uncertainty as to whether loss will be incurred in respect of a particular individual. It is also assumed that the contribution of an individual should be in line with his or her known level of risk. [51] In the context of risk assessment, genetic information is no different to any other type of information. For that reason, insurers believe they should have access to all relevant and available information that impacts on risk assessment. As the Association of Superannuation Funds of Australia Limited stated in its submission:

… it is reasonable and fair for insurers to be able to request that all existing genetic test results be made available to the insurer for the purposes of classifying the risk associated with an individual. … Where a valid and robust statistical correlation exists between a test result and the incidence of death or disability, then an insurer should be permitted to take this into account. [52]

4.57 The draft Life Investment and Superannuation Association of Australia (LISA) policy on genetic testing attached to the submission of Investment and Financial Services Association Ltd [53] also made the point that:

… the process of risk classification should be free to evolve and reflect the current state of medical knowledge ... [54]

4.58 The committee notes that there are currently no reported cases of discrimination in Australia in relation to insurance [55], nor has there been significant use of genetic information by the insurance industry:

Currently, Australian insurers rarely encounter the results of genetic tests in underwriting practice. For example, during the last 12 months, major insurer National Mutual Financial Services, has only encountered two applicants (out of approximately fifty thousand) who had undergone a genetic test. [56]

Access to existing genetic information

4.59 The insurance industry argues that there are strong grounds for allowing underwriters to access existing genetic test results. A major reason is that where applicants for insurance have had tests, but there is no requirement to reveal the results to insurers, there is the risk of antiselection. Antiselection is the practice by applicants for insurance of not disclosing information to the insurer regarding their health or other relevant factors that would, if disclosed, lead to a higher premium or the application being rejected:

An individual aware of genetic test results indicating that they are at high risk of premature death may find life insurance a very attractive option. On the other hand, armed with genetic test results that indicate a very low risk of early death some individuals will choose not to take out insurance. [57]

4.60 As a consequence, insurance companies may become financially non-viable. Antiselection may also create a situation that implicitly discriminates in favour of those who have diagnosed genetic conditions, and against those who suffer from other diagnosed illnesses.

4.61 The committee also notes that it has long been routine practice for insurers to require applicants for insurance to provide information about family histories, which itself is in the nature of existing genetic information. [58]

Arguments against insurers' access to genetic information

4.62 It is argued that access by insurers will result, over the longer term, in a decrease in the availability of insurance, as some individuals will be excluded from buying insurance due to their genetic characteristics. Also, some insurers may exclude all but low risk applicants, thus increasing the insurance burden on other insurance companies. A ban on the use of genetic information would therefore attempt to ensure that insurers take their fair share of “higher risk” insureds. [59]

4.63 More significantly, genetic information is of limited predictive value. Test results may be misinterpreted, with erroneous judgments the result. As Dr. Otlowski of the Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia points out:

The danger is that genetic information is often credited with greater probative value than it deserves, in many cases treated as if it was medical fact rather than mere prediction. Genetic information is extremely complex even for medical practitioners. … Many genetic tests change probabilities and are not about certainties. … a number of respondents from within the field of clinical genetics predicted that it will be many years, quite possibly decades, before an accurate picture emerges. [60]

4.64 Also of concern is the possibility that at-risk individuals may refuse to undertake genetic testing, possibly jeopardising their health, for fear that the test results will be used by insurers to deny them insurance. This is particularly relevant where early knowledge of a condition or predisposition may have a role in treatment. [61]

Insurers' capacity to require genetic testing

4.65 Another issue is whether insurers should be permitted to require applicants for insurance to undergo genetic testing. The insurance industry itself does not support this approach:

The psychological impact of such [genetic test] information may be devastating for some people. … It is possible that many individuals would prefer not to know their risk, particularly for diseases for which there is no prospect of prevention or cure and which have no implications for others. LISA therefore believes that it is inappropriate for insurance companies to request applicants for insurance to undergo genetic testing. [62]

4.66 The Australian Huntington's Disease Association shares this viewpoint. [63]

Current regulation

4.67 Insurance contracts are undertaken on the basis of good faith, which is reinforced by the terms of the Insurance Contracts Act 1984. Subsection 21(1) of that Act sets out the insured's duty of disclosure. The insured has a duty to disclose to an insurer, before the contract of insurance is entered into, every matter known to the insured, or that a reasonable person in the circumstances could be expected to know, relevant to the insurer's decision whether to accept the insurance risk and if so, on what terms. Thus individuals applying for insurance are under a legal obligation to supply the insurer with existing results of genetic tests (though they are not obliged to undertake new tests) and insurers are legally entitled to access to existing genetic test results (though they may be held accountable through anti-discrimination legislation for the use made of that information). [64]

4.68 There are few other legislative controls over the handling of private information by insurers. There are no legal impediments to insurers sharing information or selling it to one another or to other parties [65], nor are there any industry codes of conduct or guidelines governing the use of personal information collected by insurance companies. However, as stated above, the Investment and Financial Services Association Ltd (IFSA) has developed a proposed code of conduct for the insurance industry on the use of genetic testing. The main points of the code are that insurance companies:

• will not initiate any genetic tests on applicants for insurance;
• may request that existing test results be made available to the insurer for the purposes of classifying the risk;
• will ensure that the results of existing genetic tests are only obtained with the written consent of the individual concerned;
• will ensure that strict standards of confidentiality apply in the handling and storage of the results of genetic tests;
• will only use the results of genetic tests in the assessment of the insurance application of the individual on whom the test was conducted – the results will not be used in the assessment of insurance applications of relatives of the tested individual;
• will not make the results of genetic tests available to third parties other than reinsurance companies that may be directly involved in assessing the risk. [66]

4.69 The committee also notes the application of section 46 of the Commonwealth Disability Discrimination Act 1992. [67] That section exempts insurers, allowing them to discriminate in the provision of insurance if the discrimination is based on actuarial or statistical data on which it is reasonable for the insurer to rely and the discrimination is itself reasonable having regard to the data and other relevant factors. The insurer can also discriminate if there is no actuarial or statistical data, provided the discrimination is reasonable having regard to any other relevant factors.

4.70 The complaints mechanisms available to individuals claiming discrimination in the provision of insurance, or mishandling of their private information, are limited.

4.71 Within the industry, there are internal company complaints tribunals, as well as the Life Insurance Complaints Service, however, these offer limited scope for redress of grievances. [68] Indeed, the principal role of the Life Insurance Complaints Service is to deal with complaints of existing policyholders, and individuals alleging discrimination may not be able to access the service.

4.72 The redress available pursuant to the Disability Discrimination Act 1992 is also limited. In the wake of the decision of the High Court of Australia in the Brandy case [69], a complainant, having obtained a Commission determination in relation to a discrimination claim, must commence new legal proceedings in the Federal Court in order to enforce that determination.

Conclusions

4.73 Both the issue of privacy laws covering the private sector, and the proposed legislation to address the implications of the Brandy decision, are the subject of separate inquiries by the Legal and Constitutional References Committee and the Legal and Constitutional Legislation Committee respectively and will not be commented upon in detail in this report. [70]

4.74 The bill prohibits discrimination by insurers, prohibits insurers requiring applicants to undergo genetic testing and provides for individuals to make privacy and discrimination complaints. However, in prohibiting discrimination by insurers, it does not take into account the exemption for insurers already contained in the Disability Discrimination Act 1992, nor the discretion in the Life Insurance Act 1995, which allows insurers to determine premium rates based on actuarial advice. The committee believes that the privacy and discrimination issues arising from the use of genetic information by insurers require further consideration and consultation, particularly in regard to the ability of insurers to use actuarial or statistical data, derived from genetic test results, for the calculation of premiums and the determination of their insurance policies. The draft Life Investment and Superannuation Association of Australia (LISA) policy on genetic testing attached to the submission of Investment and Financial Services Association Ltd goes some way in addressing privacy and discrimination concerns, however, the draft policy does not declare the sanctions that can be applied for failure to adhere to the policy. Such sanctions should be clearly stated, in order to promote certainty and confirm the existence of enforceable rights and obligations.

Forensics

4.75 The processes and procedures covering genetic testing for the purposes of forensic investigations are included in separate legislation. [71] Although Part 3 of the bill relates to the collection, storage and analysis of DNA samples, it does not apply in situations that are otherwise covered by law, thus the bill does not address the use of genetic testing for these purposes. The committee has nonetheless considered issues relevant to this area.

4.76 DNA profiling can determine with a high degree of accuracy whether two biological samples have come from the same individual or not. This has obvious applications for law enforcement, where it can be used to determine whether:

• body tissue deposits at the scene of a crime come from a suspect;
• body tissue deposits from a victim match deposits found on the possessions of a suspect;
• a series of crimes, such as rapes, have been perpetrated by the same offender; and
• to exclude someone as a suspect. [72]

4.77 However, as the Privacy Commissioner [73] has pointed out, there are significant limitations to the usefulness of DNA tests:

• perpetrators of serious crimes rarely leave biological samples at the crime scene;
• fingerprints are relevant to the legal resolution of a crime in approximately 5% of criminal cases, DNA samples are relevant in even less cases, as fingerprints are more likely to be left at the crime scene;
• biological samples must be collected within 20 hours of leaving the body in order to be useful;
• inferences drawn from DNA identification analysis rely on information about the frequency of individual genetic characteristics in the population – estimates of these frequencies may often be wrong, as different racial groups have different distributions of genetic characteristics; and
• DNA profiling is expensive and time consuming.

4.78 The committee considers that there are three privacy issues in relation to the application of genetic testing to forensic investigations.

Compelling individuals to provide biological samples

4.79 The first issue is whether individuals should be compelled to give genetic samples to police or law enforcement officers. A related concern involves the use of genetic test results from compulsorily collected biological samples.

4.80 The committee recognises that taking genetic samples may be of great assistance to law enforcement officers, enabling the physical identification of offenders, particularly in relation to violent crime. Nevertheless, the committee is also cognisant of the threat to civil liberties and the dangers of uncontrolled access to and use of genetic information in relation to law enforcement. In particular, the committee does not consider it appropriate to use the results of genetic tests to infer psychological traits about a suspect, in light of the current limited knowledge about the correlation between genetic test results and psychological traits.

4.81 The committee notes that general principles of law require that biological samples should be taken only with the consent of the individual [74], and further, that individuals have the right not to incriminate themselves (the privilege against self-incrimination). [75]

Current regulation

4.82 Legislation is already in existence that overrides these general principles. If a person in custody refuses to give a biological sample when requested to do so, while the precise law in each Australian jurisdiction differs [76], it is nonetheless permissible (subject to various restrictions and conditions) for police officers to compel a medical examination. Further, the Commonwealth Crimes Act 1914, as amended by the Crimes Amendment (Forensic Procedures) Act 1998 (the Forensic Procedures Act), enables police investigating Commonwealth offences to compel, with the permission of a magistrate, the taking of biological samples from persons not in custody.

4.83 However, the provisions of the Forensic Procedures Act also address a number of concerns in this area. That Act:

• limits the circumstances in which biological samples can be taken, including the procedures necessary for informed consent;
• ensures that biological samples are used only for the purpose for which they are taken, by providing for their destruction after 12 months or if an interim order for the carrying out of a forensic procedure is disallowed; and
• establishes the procedures for taking samples. [77]

4.84 Several jurisdictions [78] have enacted equivalent legislation to the Commonwealth Forensic Procedures Act, based on the forensic procedures model provisions. It is anticipated that the remaining jurisdictions will do likewise. [79]

Conclusion

4.85 The committee's concerns in this area have been addressed in the federal sphere by the enactment of the Forensic Procedures Act. The committee's concerns in relation to State and Territory jurisdictions will have been answered, provided that legislation based on the forensic procedures model provisions is enacted in the remaining State and Territory jurisdictions.

Databanks and collections of genetic information

4.86 The second issue is whether law enforcement agencies should be permitted to establish genetic databanks. Such collections may take three forms:

• databanks of genetic information;
• collections of tissue samples; and
• de-identified databanks.

4.87 Databanks of genetic information contain coded identification data, which means that the type of forensic information that can be extracted from the databank is limited.

4.88 By contrast, a collection of tissue samples can be used to carry out any type of genetic test available now or in the future. The use that can be made of such a collection would depend on whether the samples have identifiers or not. If the samples have identifiers, the potential for privacy abuses is substantial.

4.89 De-identified databanks can be used to provide statistical information about the genetic characteristics of the whole population. As a result of this general character, and the non-identification of the samples, such databanks have no privacy or discrimination implications.

4.90 The submission of the National Institute of Forensic Science stated that the development of large collections of genetic information by law enforcement agencies in New Zealand, the USA and the UK has had a considerable impact by increasing crime clear-up rates; reducing the incidence of crime, and rapid elimination of suspects. [80]

4.91 Nevertheless, the committee considers that the development of such collections poses significant privacy issues, particularly given the limited applicability of genetic testing to general criminal investigations. For this reason, the committee considers there is a need to limit the scope of law enforcement agencies to develop such databases and views with concern the proposed establishment of a National Criminal Investigation DNA Database. [81]

Current regulation

4.92 There are few restrictions on the collection, storage, use and disclosure of information contained in such databanks.

4.93 However, the committee notes that section 23YC of the Forensic Procedures Act requires forensic samples to be destroyed if an interim order for a forensic procedure is disallowed and section 23YD requires forensic samples to be destroyed if not used in relation to a specified offence within twelve months of collection. Section 23YP of that Act lists the limited circumstances in which information derived from a forensic sample may be disclosed. [82]

4.94 The committee also notes that although section 23YO of the Forensic Procedures Act provides for the use of information derived from a forensic sample in a statistical database (with no identifiers), section 23YN prohibits the recording or retention of such information in a database that enables identification of persons, after the forensic sample is destroyed in accordance with the Act. [83]

Conclusion

4.95 The committee therefore believes adequate protections have been provided in this area federally by the enactment of the Forensic Procedures Act. The provisions in those State and Territory jurisdictions that have enacted equivalent legislation do not go as far as the federal legislation or the model provisions in protecting the privacy of individuals. The committee therefore believes that additional regulation is required in this regard.

4.96 If a National Criminal Investigation DNA Database is established, as has been suggested, the committee considers that existing legislation does not addresses the applicable privacy concerns. The committee believes that substantial legislative limitations and safeguards on the collection, storage, disclosure and use of the data would need to be put in place, to ensure the protection of privacy and the appropriate use of the information contained in such a database.

Access by law enforcement agencies to other collections of genetic material

4.97 The third privacy issue concerns access by law enforcement agencies to collections of genetic information from other sources. The Privacy Commissioner notes the existence of collections of blood samples taken for blood alcohol offences, as well as for compulsory AIDS tests for inmates of NSW prisons. [84] Access by law enforcement agencies could also extend theoretically to any other hospital or research collection, such as “Guthrie spots” (see paragraph 4.12 above). Although opportunities for using such databases for forensic law enforcement purposes are currently limited, it has been suggested that this will constitute a more significant threat to privacy in the future as such databases expand in size and number.

Current regulation

4.98 The committee notes that section 16 of the Commonwealth Privacy Act requires Commonwealth and ACT agencies to comply with the Information Privacy Principles, including Principle 10 which requires that information should be used only for the purpose for which it was collected. The NSW Prisons (Administration) Regulation 1995 does not authorise the use of blood samples taken from prisoners for any purpose other than prison administration. Similarly, the NSW Traffic Act 1909 does not authorise the use of blood samples from drink drivers for any purpose other than blood alcohol analysis. Some jurisdictions have equivalent provisions, others do not.

Conclusion

4.99 The committee notes that although there is some regulation of access by law enforcement agencies to other sources of genetic data, this regulation is limited. The committee believes wider regulation is needed.

Confidence of the community

4.100 The committee is aware that there is widespread community concern over the general issue of genetics, and human cloning in particular, and that genetic technology may allow humanity to “play God” and tamper with some of the building blocks of nature in ways that may fundamentally alter the human race. Mr Michael Fleming in his submission stated:

Unfortunately, public understanding of the research outcomes to date, not to mention the foreseeable lines of future research, is weak to say the least. Occasional press references to `discoveries' of genes `for' obesity, or breast cancer susceptibility, or even homosexuality, have probably only heightened public confusion. The awe and admiration for `science' (using the term again in a very general sense) that I suspect was widely felt a generation or more ago, has in recent times been joined by relatively widespread, if rather unfocussed, suspicion, fear, or revulsion even. The pursuit and advance of science (in many of its domains) is today complicated, as rarely before, by politically expressed demands for its regulation or proscription based upon fears that the outcome of scientific endeavours (even that pursued for its own sake, disinterestedly as it were, and not sponsored by commercial, political, or military interests) may be inimical to the public interest. Genetics is a field that attracts such concerns, perhaps as few others are likely to do. [85]

4.101 The reasons for these community concerns were detailed in the submission of the Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia:

There are three main areas of concern. First, our genes are so much part of our humanness that they should never be interfered with. Secondly, gene alterations in one generation could be passed on to future generations, with unknown consequences. Thirdly, it is difficult to know where to draw the line between genetic disease caused by malfunctioning genes and traits that could only be described as undesirable. [86]

4.102 Against these legitimate concerns are the likely benefits of genetic technology, which offers a vastly improved understanding of the human body, and advanced medical treatments for many illnesses. It is therefore in the public interest to encourage genetic research, which may be endangered by a strong public backlash against genetic technology. Similarly, public misunderstanding, distrust and fear may hinder adoption of emerging genetic technology.

Conclusion

4.103 The committee believes this is a strong rationale for undertaking a thorough process of public debate and investigation in order to develop a community consensus on the use of genetic technology. Such a consensus, supported by clearly articulated rights, obligations and rules, will ensure community support for research into genetics.

Conclusion

4.104 The committee has found there is currently little evidence of discrimination or breaches of privacy arising in Australia. This is not, however, a rationale for ignoring the issues. Rapid advances in genetic technology suggest that genetic testing will soon be available for a much wider range of conditions, and will be able to be performed quickly and cheaply, giving rise to some of the privacy and discrimination issues detailed above. The committee therefore considers that a regulatory response to the issues will be necessary in the not too distant future. The options for that response are set out in the next chapter.

Footnotes

[1] Submission No. 5, Mr Arnold Ward, p. 1.

[2] Rogers v Whitaker (1992) 175 CLR 479. See also Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 5 (Implications of the Human Genome Project for Australian Employment Law and Practice, Dr Margaret Otlowski), p. 4.

[3] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 5 (Implications of the Human Genome Project for Australian Employment Law and Practice, Dr Margaret Otlowski), p. 1.

[4] Submission No. 6, Human Genetics Society of Australasia, p. 1.

[5] Submission No. 40, Privacy Commissioner, Human Rights and Equal Opportunity Commission, p. 25.

[6] Submission No. 40, Privacy Commissioner, Human Rights and Equal Opportunity Commission, p. 7, and Submission No. 14, Professor David de Kretser, Faculty of Medicine, Monash University, p. 3.

[7] Submission No. 29, Ms Margaret Boyes, p. 1, and Submission No. 1, Professor Louis Landau, Faculty of Medicine and Dentistry, University of Western Australia, p. 1.

[8] Babies are routinely tested for four metabolic errors, including cystic fibrosis – Submission No. 29, Ms Margaret Boyes, p. 6. See also Mountain States Regional Genetic Service Network Alternative uses of Guthrie spots from newborn screening programs – Increased demand for DNA specimens, [as at 10/02/1999], p. 2.

[9] Submission No. 29, Ms Margaret Boyes, p. 1.

[10] Submission No. 29, Ms Margaret Boyes, p. 1, and Submission No. 1, Professor Louis Landau, Faculty of Medicine and Dentistry, University of Western Australia, p. 1.

[11] Mountain States Regional Genetic Service Network, Alternative uses of Guthrie spots from newborn screening programs – Increased demand for DNA specimens, [as at 26/06/1998], p. 1.

[12] See also Good Eggs, Bad Eggs, Time, 11 January 1999, pp. 34-37.

[13] Submission No. 20, Christian Lawyers Association, p. 3, and Submission No. 37, Plunkett Centre for Ethics in Health Care, p. 2.

[14] These issues have already attracted considerable attention. Working groups or committees were formed in each state to consider these issues, particularly in relation to in vitro fertilisation. Details of the resulting reports are included in Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 2 (Current Regulation of Human Genetic Research and Therapy in Australia, Professor D. Chalmers and Dr D. Nicol), p. 37.

[15] Submission No. 40, Privacy Commissioner, Human Rights and Equal Opportunity Commission, p. 2.

[16] Submission No. 40, Privacy Commissioner, Human Rights and Equal Opportunity Commission, p. 2.

[17] Julie Breen v Cholmondeley W Williams (1996) 186 CLR 71.

[18] Julie Breen v Cholmondeley W Williams (1996) 186 CLR 71, at 115.

[19] Submitted to the committee as an attachment to Submission No. 24, Australian Medical Association Limited.

[20] Submission No. 12, Donor Conception Support Group of Australia Inc., p. 4.

[21] Submission No. 12, Donor Conception Support Group of Australia Inc., p. 5.

[22] Submission No. 12, Donor Conception Support Group of Australia Inc., p. 5.

[23] Submission No. 3, Faculty of Medicine and Centre for Values, Ethics and the Law in Medicine, University of Sydney, p. 2.

[24] Submission No. 41, National Centre for Epidemiology and Population Health, Australian National University, p. 2.

[25] Senate Hansard, 11 March 1998, p. 593.

[26] This decision would not necessarily be followed in Australia “due to the unique Australian jurisprudence in trust and fiduciary law” – Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, p. 11.

[27] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 2 (Current Regulation of Human Genetic Research and Therapy in Australia, Professor D. Chalmers and Dr D. Nicol), pp. 53-54.

[28] Submission No. 38, Mr Michael Fleming, p. 5.

[29] Submission No. 38, Mr Michael Fleming, p. 13.

[30] Submission No. 31, SmithKline Beecham International, p. 4.

[31] Submission No. 37, Plunkett Centre for Ethics in Health Care, p. 2.

[32] Submission No. 38, Mr Michael Fleming, p. 17.

[33] The committee also notes the existence of bodies such as the National Bioethics Consultative Committee (NBCC); the Genetic Manipulation Advisory Committee (GMAC); and Institutional Biosafety Committees (IBCs).

[34] National Health and Medical Research Council Act 1992, subsection 36(1).

[35] Submission No. 8, Australian Health Ethics Committee, National Health and Medical Research Council, p. 2.

[36] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 2 (Current Regulation of Human Genetic Research and Therapy in Australia, Professor D. Chalmers and Dr D. Nicol), p. 34.

[37] Submission No. 8, Australian Health Ethics Committee, National Health and Medical Research Council, p. 2.

[38] Submission No. 8, Australian Health Ethics Committee, National Health and Medical Research Council, p. 2.

[39] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 5 (Implications of the Human Genome Project for Australian employment law and practice, Dr Margaret Otlowski), p. 1.

[40] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 5 (Implications of the Human Genome Project for Australian employment law and practice, Dr Margaret Otlowski), pp. 2-3.

[41] This form of genetic testing is set out in the National Model Regulations for the Control of Workplace Hazardous Substances, issued by the National Occupational Health and Safety Commission, Sydney, March 1994, which lay down standards for the undertaking of health surveillance in the workplace.

[42] Submission No. 38, Mr Michael Fleming, p. 10.

[43] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 5 (Implications of the Human Genome Project for Australian employment law and practice, Dr Margaret Otlowski), pp. 9-10.

[44] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 5 (Implications of the Human Genome Project for Australian employment law and practice, Dr Margaret Otlowski), p. 23, quoting the comments of the UK Nuffield Council on Bioethics, Genetic Screening: Ethical Issues (1993), paragraphs 6.20 – 6.22.

[45] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 5 (Implications of the Human Genome Project for Australian employment law and practice, Dr Margaret Otlowski), p. 17.

[46] Submission No. 43, ACT Government, p. 3.

[47] Submission No. 42, Attorney General's Department, paragraph 34. See also Submission No. 17, Caroline Chisholm Centre for Health Ethics, p. 4.

[48] Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 77.

[49] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 5 (Implications of the Human Genome Project for Australian employment law and practice, Dr Margaret Otlowski), p. 13. This conclusion is shared by the Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 86.

[50] See also Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 4 (Implications of the Human Genome Project for Australian Insurance Law and Practice, Dr Margaret Otlowski), p. 7; and Submission No. 26, Investment and Financial Services Association Ltd, Attachment – LISA Underwriting Guide: Underwriting and Genetic Testing, Draft LISA Policy on Genetic Testing, June 1997, p. 28.

[51] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 4 (Implications of the Human Genome Project for Australian Insurance Law and Practice, Dr Margaret Otlowski), p. 5.

[52] Submission No. 32, Association of Superannuation Funds of Australia Limited, p. 2.

[53] Formerly known as the Life Insurance and Superannuation Association of Australia (LISA).

[54] Submission No. 26, Investment and Financial Services Association Ltd, Attachment – LISA Underwriting Guide: Underwriting and Genetic Testing, Draft LISA Policy on Genetic Testing, June 1997, p. 28.

[55] Second reading speech, Senate Hansard, 11 March 1998, p. 593.

[56] Submission No. 26, Investment and Financial Services Association Ltd, p. 3.

[57] Submission No. 26, Investment and Financial Services Association Ltd, Attachment – LISA Underwriting Guide: Underwriting and Genetic Testing, Draft LISA Policy on Genetic Testing, June 1997, p. 30.

[58] Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 67.

[59] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 4 (Implications of the Human Genome Project for Australian Insurance Law and Practice, Dr Margaret Otlowski), p. 25.

[60] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 4 (Implications of the Human Genome Project for Australian Insurance Law and Practice, Dr Margaret Otlowski), p. 27.

[61] See also Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 4 (Implications of the Human Genome Project for Australian Insurance Law and Practice, Dr Margaret Otlowski), pp. 30-32.

[62] Submission No. 26, Investment and Financial Services Association Ltd, Attachment – LISA Underwriting Guide: Underwriting and Genetic Testing, Draft LISA Policy on Genetic Testing, June 1997, p. 33.

[63] Submission No. 16, Australian Huntington's Disease Association (NSW) Inc., p. 2.

[64] See Submission No. 42, Attorney General's Department, p. 2; and Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 4 (Implications of the Human Genome Project for Australian Insurance Law and Practice, Dr Margaret Otlowski), p. 32.

[65] Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 68.

[66] Submission No. 26, Investment and Financial Services Association Ltd, Attachment – LISA Underwriting Guide: Underwriting and Genetic Testing, Draft LISA Policy on Genetic Testing, June 1997, p. 34.

[67] State and Territory anti-discrimination legislation contains similar or equivalent provisions – see:Anti-Discrimination Act 1977 (NSW), section 49Q
Equal Opportunity Act 1984 (SA), section 85
Equal Opportunity Act 1984 (Vic), section 39
Equal Opportunity Act 1984 (WA), section 66T
Anti-Discrimination Act 1991 (Qld), sections 61 and 74
Discrimination Act 1991 (ACT), section 28
Anti-Discrimination Act 1991 (NT), section 48
Anti-Discrimination Act 1998 (Tas), section 44.However, since the enactment of the Commonwealth Disability Discrimination Act 1992, such State and Territory legislation has only a residual role, particularly since most insurance companies do not operate only in one jurisdiction, and would therefore fall within the ambit of the Commonwealth Act.

It should be noted also that, on the basis of Australian Mutual Provident Society v Goulden and Others (1986) 160 CLR 330, State provisions which make it unlawful to refuse to insure a person or to have any adverse differentiation in insurance terms on the grounds of impairment, are subject to challenge under section 109 of the Constitution, on the basis of the inconsistency between the relevant State legislation and the Commonwealth Life Insurance Act 1995, which gives insurers the discretion to determine premium rates based on actuarial advice. See also Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 4 (Implications of the Human Genome Project for Australian Insurance Law and Practice, Dr Margaret Otlowski), pp. 13-15.

[68] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 4 (Implications of the Human Genome Project for Australian Insurance Law and Practice, Dr Margaret Otlowski), p. 10.

[69] Brandy v Human Rights and Equal Opportunity Commission and Ors (1995) 183 CLR 245.

[70] See Senate Legal and Constitutional Legislation Committee report on the Human Rights Legislation Amendment Bill 1996, tabled 26 June 1997 (Parliamentary Paper 139 of 1997) and report on the provisions of the Human Rights Legislation Amendment Bill (No. 2) 1998, tabled 17 February 1999; and Senate Legal and Constitutional References Committee report on privacy and the private sector, tabled 25 March 1999.

[71] For a detailed discussion of the legislation relating to the taking of biological samples, see Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 55.

[72] Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 52.

[73] Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 53.

[74] Rogers v Whitaker (1992) 175 CLR 479.

[75] The committee notes that in the UK, a court may make an adverse inference from a suspect's refusal to give a biological sample – see Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 56. The use of this adverse inference is not applicable in Australia.

[76] For a detailed discussion of the legislation relating to the taking of biological samples, see Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 55.

[77] See also Senate Legal and Constitutional Legislation Committee report on the Crimes Amendment (Forensic Procedures) Bill 1997, November 1997, Parliamentary Paper 462 of 1997.

[78] Victoria: Crimes (Amendment) Act 1997, Act No. 81 of 1997.
South Australia: Criminal Law (Forensic Procedures) Act 1998, Act No. 8 of 1998.
ACT: Crimes (Amendment) Act (No. 2) 1994, Act No. 75 of 1994

[79] Replacement explanatory memorandum to Crimes Amendment (Forensic Procedures) Bill 1997, p. 1.

[80] Submission No. 15, National Institute of Forensic Science Australia, p. 2.

[81] Submission No. 15, National Institute of Forensic Science Australia, p. 1.

[82] Similar provisions are contained in the equivalent legislation enacted in Victoria, South Australia and the ACT.

[83] Similar provisions are contained in the equivalent legislation enacted in Victoria and South Australia. The South Australian provision does not require the information to be kept without identifiers and also allows for information on databases to be exchanged with other jurisdictions.

[84] Privacy Commissioner, Information Paper No. 5 – The Privacy Implications of Genetic Testing, p. 61.

[85] Submission No. 38, Mr Michael Fleming, pp. 3-4.

[86] Submission No. 19, Research Group for the Study of the Legal and Ethical Implications of Human Genetic Research in Australia, Appendix 2 (Current Regulation of Human Genetic Research and Therapy in Australia, Professor D. Chalmers and Dr D. Nicol), p. 40.