28.07.2010
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 include law enforcement and forensic purposes, disaster victim identification, paternity testing or to aid diagnosis of an inherited condition.[119]
18.119 DP 66 asked whether legislation is needed to govern the disclosure, for law enforcement purposes, of genetic samples and information held in human genetic research databases. Such legislation might also extend to other secondary uses of samples and information.
18.120 In the United Kingdom, the Human Genetics Commission (HGC) has recommended that genetic databases established for health research should not be used for any other purpose and that this should be put beyond doubt, by legislation if necessary.[120] The HGC referred, in particular, to the ‘pressure for allowing police access for purposes of identification’.[121]
18.121 In Australia, the Privacy Act allows personal information to be disclosed without consent where the disclosure is reasonably necessary for the enforcement of the criminal law or of a law imposing a pecuniary penalty, or for the protection of the public revenue.[122] Some state and territory information privacy legislation contains similar provisions.[123] These provisions are permissive in that they permit agencies or organisations that hold personal information to disclose it without breaching privacy legislation, but do not require disclosure.
18.122 Disclosure of genetic samples and information for purposes other than those for which they were collected constitutes an interference with privacy. In donating samples and information to a research database, an individual consents to their use for research, not for other purposes. The use of samples and information for unrelated purposes might be a violation of the consent agreement between the database operator and the donor. Over time, people may be less willing to donate samples for research if they fear the samples will be used for other purposes.
18.123 The need for tighter controls on the use, disclosure and transfer of genetic samples and information held in research databases was recognised in many submissions. A number supported the introduction of legislation to deal specifically with this issue.[124] Some suggested that the same principles as those laid down in the Privacy Act should be applied.[125]
18.124 The HGSA noted that there are practical problems with the use of genetic samples and information held in research databases for law enforcement or other purposes. For example, establishing that samples and information are accurately identified might not always be possible. Police may also be unlikely to seek access to samples and information in databases, as they would first need to be aware they had been donated. Samples and information that have been de-identified would be unlikely to be of use to them.[126]
18.125 Recognising the need to protect the privacy of samples and information donated to databases, the Australian Biospecimen Network stated:
It is essential that … legislation be established to ensure that the present situation in which a person can obtain a court order to obtain genetic samples or information be more tightly restricted. This is essential for future compliance of consent as individuals may withhold consent if they feel that others may invade their genetic privacy for a purpose different to that [for] which the ‘information’ was given. Such protection would be consistent with the Privacy Act’s spirit of collecting information only for the purpose [for] which consent was given, and for example demanding a sample for paternity testing would be a clear violation of the spirit of the consent to keep the sample/information only for medical research.[127]
18.126 The OFPC also noted that public health should not be prejudiced by individuals’ concern that the health information they provide may be disclosed for insurance, employment, or law enforcement purposes.[128]
Inquiry’s views
18.127 There is a need to develop a more formalised approach to requests for transfer or disclosure of samples and information held in databases to ensure that these are released only in appropriate circumstances. The Inquiry recommends that the Australian Health Ministers’ Advisory Council, in consultation with state and territory Attorney-General’s Departments and police services, the HGCA and the NHMRC, should develop rules for transfer or disclosure of samples and information held in human genetic research databases for law enforcement purposes.
18.128 A national policy developed in this way will be able to define how requests for the transfer or disclosure of samples and information to third parties are to be dealt with. The rules will help avoid the current inconsistencies of practice whereby database administrators develop their own policies on disclosure for law enforcement purposes, sometimes through memoranda of understanding with law enforcement agencies.[129] Police access to stored samples is also considered from the perspective of law enforcement in Chapter 41.
Recommendation 18–4 The Australian Health Ministers’ Advisory Council, in consultation with state and territory Attorney-General’s Departments and police services, the Human Genetics Commission of Australia and the NHMRC, should develop nationally consistent rules governing the disclosure, for law enforcement purposes, of genetic samples and information held in human genetic research databases. These rules should provide for disclosure only: (a) with the consent of the sampled person or a person authorised to consent on his or her behalf; or (b) pursuant to a court order.
[119] For example, to diagnose whether someone has a particular inherited mutation, it is necessary to know the exact mutation and the disease symptoms it causes. A sample taken from a family member who has displayed the symptoms associated with the disease is needed to determine the exact mutation that causes the disease in that family. Other family members are then tested to see whether they carry this mutation, which will determine whether they also will develop the disease.
[120] Human Genetics Commission, Inside Information: Balancing Interests in the Use of Personal Genetic Data (2002), London, 105.
[121] Ibid, 105.
[122]Privacy Act 1988 (Cth) IPP 11.1(e); NPP 2.1(h).
[123] For example, Health Records Act 2001 (Vic) Health Privacy Principle 2.2(i), (j); Privacy and Personal Information Protection Act 1998 (NSW) ss 18, 23(5).
[124] Department of Human Services South Australia, Submission G288, 23 December 2002; Department of Health Western Australia, Submission G271, 23 December 2002; Australian Biospecimen Network, Submission G238, 19 December 2002; Centre for Law and Genetics, Submission G255, 21 December 2002; J Fleming, Submission G241, 20 December 2002.
[125] Institute of Actuaries of Australia, Submission G224, 29 November 2002.
[126] Human Genetics Society of Australasia, Submission G267, 20 December 2002.
[127] Australian Biospecimen Network, Submission G238, 19 December 2002.
[128] Office of the Federal Privacy Commissioner, Submission G294, 6 January 2003.
[129] As is the case with the Memorandum of Understanding between the New South Wales Newborn Screening Programme and the New South Wales Police (see Ch 19).