28.07.2010

Personal insurance in Australia

25.6 Insurance in Australia is commonly divided into three categories: life, health and general insurance. Life insurance encompasses a variety of products, including policies that provide payment upon death, continuous disability or trauma. Health insurance provides payment for the provision of hospital and ancillary medical and health services. General insurance covers matters not addressed by

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28.07.2010

Disclosure of genetic information to genetic relatives

21.18 Many submissions identified disclosure of genetic information to genetic relatives as an important issue for the Inquiry. In what circumstances should a patient or his or her doctor inform other members of the family about genetic information relevant to the latter’s health or well-being? For example, it has been suggested that before patients are

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28.07.2010

Legal status of genetic samples

20.11 The present state of the law suggests that human tissue samples are property in a limited sense, and in limited circumstances. The traditional position under the common law was that a human corpse could not be the subject of property rights. This rule gained support in a number of English cases and was generally

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28.07.2010

Amendment of the Human Tissue Acts

20.38 DP 66 considered whether the Human Tissue Acts might be a useful vehicle for new regulations dealing with the collection and handling of human tissue samples and, in particular, the use of clinical samples for genetic research.[44]20.39 The Inquiry considers that amending the Privacy Act as recommended in Chapter 8 is a more effective

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28.07.2010

Inquiry’s views

19.92 The handling of samples and information held in human tissue collections is regulated by a complex, fragmented and overlapping set of legislation and guidelines. In relation to some aspects of the handling of some genetic samples and information there is no clear need for further regulation because detailed rules have already been established and

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28.07.2010

The need for reform

Privacy18.53 Genetic databases raise privacy concerns because they store large quantities of genetic samples and information that may be accessed by many different researchers, over many years, and for many different research purposes. These concerns include questions about consent to storage, use and re-use of genetic samples and information, linking of information to genetic samples,

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28.07.2010

Options for reform

18.71 The Inquiry has considered a number of options for regulating human genetic research databases, including:the inclusion of new provisions in the National Statement;a licensing or registration scheme; andthe use of a gene trustee system to protect the privacy of samples and information stored in databases.[74]18.72 These options are not mutually exclusive, and could be

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28.07.2010

Secondary uses of research databases

18.118 Individuals who donate genetic samples and information to human genetic research databases do so with the aim of aiding medical researchers in their endeavours to improve their understanding of disease and to develop new treatments. In some instances, others may seek to obtain access to these samples and information for different purposes. These could

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28.07.2010

Introduction

16.1 The National Health and Medical Research Council’s (NHMRC) National Statement on Ethical Conduct in Research Involving Humans (the National Statement)[1] offers guidance on, rather than prescription of, ethically sound research design and practice.16.2 In relation to human genetic research, comprehensive guidance is provided on a range of issues, including the social significance and consequences

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28.07.2010

The Privacy Act and consent

15.14 Under National Privacy Principle (NPP) 10.3 of the Privacy Act, health information may be collected without consent for research purposes if obtaining consent is impracticable, de-identified information would not be suitable, and the collection is in accordance with guidelines issued by the NHMRC and approved by the Privacy Commissioner under s 95A of the

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