The protection of genetic information of Indigenous peoples

Submission to the Australian Law Reform Commission inquiry into the protection of genetic information

by the Aboriginal and Torres Strait Islander Social Justice Commissioner, HREOC

13 May 2002


Introduction

Special situation of Australian Indigenous peoples

International human rights standards as a means of protecting Indigenous genetic information

1. Indigenous Identity

2. Recognition of Indigenous cultural protocols

3. Protection of genetic information provide by Indigenous people for particular purposes

4. An equitable sharing in the benefits

Recommendations


Introduction

This submission is made by the Aboriginal and Torres Strait Islander Social Justice Commissioner of the Human Rights and Equal Opportunity Commission. It considers the human rights implications of the use of the genetic information of Aborigines and Torres Strait Islanders (herein, Indigenous peoples) and the adequacy of current levels of protection.

The Secretariat to the United Nations Working Group on Indigenous Populations has summarised the challenge created by genetic research to Indigenous people as follows:

Modern science has developed to the point that scientists are now seeking to trace history and cure disease by investigating human, animal and plant genes. While this practice has been occurring for some time using plant and animal genes, it is only recently that human genes have been used in research. Therefore, the discussion of the ethical and legal issues arising from the use of human genes for research is also relatively new. A parallel development in scientific research generally is the steady move from State-sponsored to privately funded research, and the inevitable influence of the profit motive in this field. As a consequence, many major projects in scientific research, including in the field of human genome research, are conducted by large pharmaceutical companies, not universities or government research institutes.

These rapid changes have left some observers feeling that the ethical and legal implications of human genome research have not been taken seriously by those who undertake and benefit from such work. Such implications exist at every stage of the work, including the actual creation of research projects to study human genome material, the collection of samples, the subsequent research and possible manipulation of genes, and the products and results stemming from the research undertaken.

Indigenous peoples have come into contact with human genome research predominantly as subjects of research in the Human Genome Diversity Project…The discussion of the ethics and legality of such research in the context of indigenous peoples should focus on issues of consent to becoming subjects in the HGDP, and of their possible rights to enjoy the benefits of the research, financial, medical and anthropological. [1]

The gathering and use of genetic information impacts in a unique manner on Indigenous peoples because of their:

traditional belief structures or a perceived lack of bargaining power. Difficulties with the [Human Genome] Project specific to indigenous peoples include the attitude of the Project to indigenous peoples, the perceived violation of their cultural and religious values by interference with the human body, the possible effects the information gained may have for a sampled community, the problems of gaining fully informed consent for the collection of samples from the appropriate power in the community (which may not be just the individual participant), and the participant's property rights over samples and the products of research. [2]

The United Nations Working Group on Indigenous Populations has also recognised that many Indigenous people believe that the Human Genome Project:

is potentially racist as it is based on outmoded notions of race and that human groups may be defined by genetic characteristics but that these vary from group to group in a distinctive manner. At the very least, it is feared that the information will be hijacked for political purposes to support arguments that certain population groups are genetically superior or inferior. A report entitled 'Bioethics and human population genetic research' submitted to the third session of the UNESCO International Bioethics Committee in November 1996 pointed out that there is greater diversity within populations than between them and that population geneticists note that population genetics offers no scientific basis for the belief that certain races (however defined) are superior to other races. [3]

While the Preamble to the International Convention on the Elimination of All Forms of Racial Discrimination categorically affirms:

that any doctrine of superiority based on racial differentiation is scientifically false, morally condemnable, socially unjust and dangerous,

concern has been expressed that:

some scientists involved in the Project do not acknowledge that possible racist implications should be a consideration in their work. [4]

This concern has been echoed in Australia by Indigenous people many of whom refer to the Human Genome Project as 'The Vampire Project' [5] fearing that genetic samples taken from them without consent could be patented and 'owned' by government or corporations. Of particular concern is the loss of control of Indigenous genetic information.

This submission addresses these issues and argues that legislation is necessary to provide adequate protection for the genetic information of Aboriginal and Torres Strait Islander peoples.

Special situation of Australian Indigenous peoples

The Human Genome Project has revealed that we are all one species. [6] However within our species the Aboriginal population of Australia has been shown to be one of the most genetically diverse in the world, indicating that it is also one of the oldest. [7] Its relative isolation from the rest of the world for up to 50,000 years is likely to provide information and genetic material of extreme commercial and academic interest.

As the most disadvantaged members of Australian society, Aboriginal and Torres Strait Islander peoples are especially vulnerable to exploitation. Their past encounters with colonisers have been characterised by the stealing of land, knowledge, culture and the arts. [8] Genetic mutations found in discrete populations are providing yet another rich field for exploitation, this time by trans-national pharmaceutical companies acting with the explicit or implicit support of national or state governments. For example, researchers are looking for specific genes for schizophrenia in Finland, HIV in Gabon, obesity in Micronesia and alcoholism in Iceland.

In this situation self-regulation of the genetic research industry is not sufficient in a highly competitive commercial field where government has a vested interest in the outcomes of research. [9] Federal legislation will be necessary to protect Indigenous peoples' genetic information.

International human rights standards as a means of protecting Indigenous genetic information

In 1997 the twenty-ninth session of the UNESCO General Conference unanimously adopted the Universal Declaration on the Human Genome and Human Rights. The Declaration addresses some of the concerns of indigenous people by setting international standards for genetic research based on respect for fundamental human rights. [10] Article 10 provides a standard by which State Parties such as Australia can protect Indigenous genetic information:

No research or research applications concerning the human genome, in particular in the fields of biology, genetics and medicine, should prevail over respect for the human rights, fundamental freedoms and human dignity of individuals or, where applicable, of groups of people.

Australia is a party to a number of human rights conventions whose standards, particularly those relating to the human rights of Indigenous peoples, could provide a regulatory framework for the protection of genetic information in relation to the following issues:

  • Indigenous identity
  • the recognition of Indigenous cultural protocols
  • protection of material provided by Indigenous people for particular purposes
  • an equitable sharing in the benefits arising from the use of genetic information

1. Indigenous Identity

Two issues are raised in the Issues Paper at paras 12.25-12.27:

Should DNA be used to establish Indigenous identity for the purposes of

  • access to benefits; and
  • access to native title

Access to benefits

The most important factor which defines indigenous people is their cultural and spiritual relationship with their land. Indigenous people have resisted attempts internationally to prescribe an exhaustive definition of 'Indigenous'. [11] The Cobo Report, presented to the United Nations in 1986, identified the following features common to Indigenous peoples:

Indigenous communities, peoples and nations are those which, having a historical continuity with pre-invasion and pre-colonial societies that developed on their territories, consider themselves distinct from other sectors of the societies now prevailing in those territories...They form at present non-dominant sectors of society and are determined to preserve, develop and transmit to future generations their ancestral territories, and their ethnic identity, as the basis of their continued existence as peoples, in accordance with their own cultural patterns, social institutions and legal systems. [12]

One of the most fundamental principles enunciated by Indigenous peoples at the United Nations is the right to self-identification. Such definition was incorporated into Article 2 of the ILO Convention (No. 169) concerning Indigenous and Tribal Peoples in Independent Countries, the only treaty currently in force addressing Indigenous specific issues:

Self-identification as indigenous or tribal shall be regarded as a fundamental criterion for determining the groups to which the provisions of this Convention apply.

This right was confirmed more recently by the UN Working Group on Indigenous Populations. [13] It is a fundamental tenet of self-determination, a right expressed in Article 1(1) of both the International Covenant on Economic, Social and Cultural Rights and the International Covenant on Civil and Political Rights:

All peoples have the right of self-determination. By virtue of that right they freely determine their political status and freely pursue their economic, social and cultural development.

Australia is signatory to both these Covenants. Self-determination underlies the right of ethnic, religious or linguistic minorities to practice their own culture (Article 27 International Covenant on Civil and Political Rights) and the right of Indigenous peoples to belong to an indigenous community or nation in accordance with their own traditions and customs (Article 9 Draft Declaration on the Rights of Indigenous Peoples, 1994).

United Nations General Recommendations on the interpretation of international instruments state that the way in which members of a particular racial or ethnic group or groups are to be defined shall be based upon self-identification by the individual concerned if no justification exists to the contrary. [14] Therefore a test of whether a person is indigenous based on biology is not only scientifically untenable but contrary to international human rights principles.

The international standard has been adopted in the UK [15] and New Zealand [16] where the legal test of whether a person belongs to a particular ethnic group is based on self-identification and identification by the community. In Australia however the right to identify as an Indigenous person according to Aboriginal customs and laws has been subverted by the three part test [17] of Aboriginality developed by Deane J in the Tasmanian Dams case:

By "Australian Aboriginal" I mean, in accordance with what I understand to be the conventional meaning of that term, a person of Aboriginal descent, albeit mixed, who identifies himself as such and who is recognised by the Aboriginal community as an Aboriginal. [18]

The test was adopted by Brennan J in Mabo (No 2) [19] and is applied to the Native Title Act and other Federal legislation which allows access to benefits such as the right to vote in ATSIC elections. [20] It does not apply to Torres Strait Islanders. [21] In defining the element of descent judges refer to pseudo-scientific concepts such as 'genetic inheritance', [22] 'quantum of Aboriginal genes'[23], and 'one sixty-fourth or one thirty-second Aborigina l genes'. [24] They have held that 'Aboriginal genes' are a necessary, but not sufficient, element of Aboriginality. [25]

This is a concerning development in the jurisprudence. It is uncomfortably close to past legal classifications of Aboriginality based on 'strains of blood'. It also creates a situation of discord in Aboriginal communities between those who define themselves by way of self- and community-identification, and those who would like to use DNA technology to prove their Aboriginality. [26]

The United Nations Committee on the Elimination of Racial Discrimination has noted that the preservation of indigenous culture and historical identity has been and still is in jeopardy. It has called on States parties to:

Recognize and respect indigenous distinct culture, history, language and way of life as an enrichment of the State's cultural identity and to promote its preservation. [27]

While Aboriginal people may generally be direct descendants of the original inhabitants of a particular part of Australia, indigenous customary law does not rely on linear proof of descent in the Judeo-Christian genealogical form of 'Seth begat Enosh begat Kenan' in order to prove membership of the group. An indigenous person from Central Australia, for example, will have many fathers and mothers. [28] A person may have been adopted into a kinship group where there is no direct or suitable offspring to carry out ceremonial obligations. [29] The place where a woman was when she first felt the quickening of her child within her womb:

links a person not only with a Dreaming and its track, but also with a place on the track where a particular ancestral event took place. This place is often referred to as the 'conception site'. A person retains a life-long association with his of her conception site and Dreaming. [30]

Genetic science should have no part to play in determining whether or not a person should be eligible for benefits. If the element of descent is to remain in Australian law as a test of Aboriginality, it should be interpreted in accordance with Indigenous cultural protocols.

Access to native title

The use of DNA technology in native title claims might be suggested where persons want to be identified as members of a claimant group, for example because they are from the Stolen Generation, but have been excluded from the native title claim for some reason. Being an identified member of a native title group could also serve as a defence to a statutory offence such as taking of undersize fish, the killing of a protected species [31] or trespass to land. [32] In the United States people have tried to prove by DNA analysis that they are members of particular First Nation groups in order to access royalties and profits from indigenous enterprises. [33]

If a person were excluded from a native title application he or she could seek to be joined as a party to the proceedings by means of an interlocutory application: s 84(5) Native Title Act 1993 (Cth). However if the determination has already been made, the person will need to apply to the Federal Court to change the existing determination: ss 13(1) and (5) Native Title Act.

According to Brennan J in Mabo a native title group is:

ascertained according to the laws and customs of the indigenous people who, by those laws and customs, have a connection with the land. [34]

This is reiterated in s 61(1) Native Title Act which provides that membership of a claim group is established according to 'traditional laws and customs' covering 'the common or group rights and interests comprising the particular native title claimed'.

Section 61(4) Native Title Act 1993 (Cth) provides that identity for the purposes of a native title claim is established in only one of two ways: either the claimants must be specifically named, or they must be sufficiently clearly described so that any particular individual can be identified as one of the claimants (for example, by describing the claimants as 'all descendants of X'). In Risk v National Native Title Tribunal [35] it was held that all members of the claimant group must be identified to be included in the claim.

Issues Paper para 12.26, footnote 16 asks, could DNA evidence be used by native title claimants to prove a biological connection with certain ancestors? This is not presently possible, except for a connection to one's maternal grandmother's mother through mitochondrial genetic analysis. [36] Unless there is access to genetic material of the ancestors, it is only possible to prove that a particular claimant is related to other living persons who also claim to be descendants of the ancestors. [37] Even if the ancestors' material were available there can be no proof of the degree of consanguinity. The exception is if one claimant is the child of another.

The definition of native title in s 223(1) Native Title Act refers to 'communal, group or individual rights…in relation to land or water'. Claims to date have dealt with communal or collective rights to native title. There is yet to be a case which considers what individual rights mean in this context. However, it is possible that it refers to an individual who may be the last person left with particular knowledge relating to a claimed area. It would be outside the scope of the Act for the section to cover claims by individuals setting themselves against a group claim. Reference to international standards suggests that indigenous collective rights should prevail over individual rights. To date, tribunals and courts have left it to the claimants to sort out issues relating to the composition of the group. [38]

Genealogists and anthropologists give evidence in tribunals to prove descent from original owners. However their role is to elucidate descent according to Indigenous kinship rules. Genetic information does not follow those rules and therefore would probably be unacceptable as a means of proving membership of the group. Like the issue in relation to benefits, membership of a native title group should be decided according to the customary laws of the Indigenous group. This conforms to international principles in relation to the identification of Indigenous people.

2. Recognition of Indigenous cultural protocols

In drafting legislation for the protection of genetic material it must be kept in mind that a law which treats everyone the same may nevertheless impact adversely on Indigenous peoples because of differences between what the legislators perceive as Australian cultural precepts and those of Aboriginal people and Torres Strait Islanders. [39] Where mainstream assumptions impact adversely on persons of a different race it could amount to indirect discrimination. Scientific experimentation on genes raises two issues in relation to Indigenous cultural protocols:

  • consent to use and disseminate genetic information
  • dealing with human remains

consent to use and disseminate genetic information

Article 7 of the International Covenant on Civil and Political Rights states that no-one shall be subjected to medical or scientific experimentation without his free consent. This right is confirmed in relation to research affecting a person's genome in Article 5(b) Universal Declaration on the Human Genome and Human Rights:

In all cases the prior, free and informed consent of the person concerned shall be obtained.

However in Aboriginal and Torres Strait Islander societies the decision to give consent to the collection and use of genetic material is not only for the person concerned: knowledge is 'collectively owned, socially based and evolving continuously'. [40] Genetic knowledge is family knowledge and consent to its use is a community issue like consent to reproduce artworks. [41] As a general rule, Indigenous communities have a decision-making structure which 'overshadows an individual's right to give consent, particularly when the consent has implications for the entire community.' [42] These structures include consultation with women as custodians of the laws. [43] Past researchers have tended to ignore Indigenous women and have negotiated with the men. Failure to obtain women's consent could constitute discrimination on the basis of gender. [44]

Legislation which addresses only an individual's consent is therefore inappropriate for achieving protection of Indigenous genetic information. [45] It will require sui generis legislation based on collective rights. This legislation must be developed in consultation with Indigenous communities or their representatives. [46]

dealing with human remains

Article 27 International Covenant on Civil and Political Rights guarantees that persons belonging to ethnic, religious or linguistic minorities shall not be denied the right, in community with the other members of their group, to enjoy their own culture and to profess and practice their own religion. Though presently in draft form, Articles 12 and 13 of the Draft Declaration on the Rights of Indigenous Peoples indicate that Indigenous peoples' cultural rights include the right to the restitution of cultural, intellectual, religious and spiritual property taken without their free and informed consent or in violation of their laws, traditions and customs, and the right to the repatriation of human remains.

The remains of many Aboriginal people are held in museums and laboratories in this country and overseas. If legislation were to allow genetic researchers open access to human remains this would adversely affect Indigenous people. Experimenting with remains, including touching, naming and photographing them, is contrary to Aboriginal spiritual beliefs regarding respect for the dead. To give a specific example, one of the ways of extracting DNA is to break the bones. While the majority of Australians might find the technique distasteful, it is anathema to Aboriginal people as the breaking of a deceased person's bones allows that person's spirit to escape. The technique is not reasonable in the circumstances, because there are other, though more difficult and expensive, ways of achieving the same purpose.

Legislation relating to genetic research must therefore be scrutinized to see what impact it would have on Aboriginal and Torres Strait Islander practices and beliefs. The most appropriate way of doing this is by Aboriginal and Torres Strait Islander people being represented on any Standing Committee which draws up and reviews the legislation.

3. Protection of genetic information provide by Indigenous people for particular purposes

Matters arising from this and the next section might be thought to fall under intellectual property as defined by Anglo-Australian law. However generally it can be said that in Indigenous cultures there is no dichotomy between intellectual property and the expressions of culture and kinship which are regulated by customary law. Nor is there a physical or spiritual separation between life forms and inanimate objects such as the land. The Inquiry's terms of reference therefore create an artificial division which lies outside Indigenous cultural experience.

This section and the next address two issues:

  • Connection Reports
  • forensic databases

Connection Reports

In Australia Indigenous genealogical and anthropological materials are available in the 'Connection' reports prepared to support native title claims. If a claim is not settled and goes to court the Connection Report becomes an exhibit. Although the material is not on the public record, any party, including government, may access it.

Pharmaceutical companies are particularly interested in genealogical information because it provides the link between genetic mutations and disease. Iceland has sold its medical records (rendered anonymous), stores of blood samples, and family trees back to the eighth century to a private company. [49] The money gained is expected to fund national medical services. Any commercial drug or gene-based diagnostic test developed from the research will be provided free of charge to all Icelanders during the lifetime of the patent (between 17 and 20 years). [50]

To protect the use of a Connection Report for purposes other than native title claims a claimant group would have to institute contempt of court proceedings. There is a need for specific legislation to confine the use of such information to native title claims unless the Indigenous parties consent to its further use.

forensic databases

Aboriginal people are grossly over-represented in the criminal justice system. Taking DNA samples from suspects and convicted offenders is routine in a number of states. In NSW a magistrate [51] or a senior police officer [52] can order a 'non-intimate forensic procedure' such as a mouth swab, or a sample taken by vacuum suction, scraping or lifting by tape from any external non-genital part of the body, if it is believed on reasonable grounds that a suspect has committed an offence, whether indictable or summary. So long as the procedure is not intimate, that is, does not involve the genitals, anal area or breasts, it does appear to be necessary that the sampling be in any way probative of the alleged offence. [53] The aim of collecting samples is to establish a database for forensic purposes but the material gathered will provide much more than mere identity. The samples, but not the information on the databases, are destroyed after use.

These DNA databases could provide a general 'snapshot' of genetic information about Aboriginal people. This would be possible because while Indigenous people comprise about 2.1% of the total Australian population, [54] they are 20% of the Australian prison population. [55] In the 2001 September quarter one out of every hundred Aboriginal people was in gaol. [56] These figures do not include persons on remand, or minors in juvenile detention. Because of the high proportions of Aboriginal people in prison there is a high probability that any Aboriginal person will be related to someone who is or has been in prison. [57] The Indigenous genetic profile would have a validity based on at least a 1% sample of the whole Aboriginal population and would provide considerable saving for researchers in terms of clinical trials. The possibility of the commercial use of these databases is increased by the trend to privatise prison services.

The NSW information is held in two indexes: limited and unlimited purposes. DNA information from volunteers [58] is generally held on the limited purposes index but can, with consent, be placed on the unlimited purposes index. The legislation also leaves open the possibility of government using the databases for purposes other than forensic use: s 92(2)(j) Crimes (Forensic Procedures) Act 2000 (NSW) allows regulations to be passed permitting additional access to the DNA databases. By means of these databases, which must by definition hold not only DNA information but personal details, researchers could gain covert access to the genetic information of the wider Indigenous community. By contrast, s 50(1) Criminal Law (Forensic Procedures) Act 1998 (S.A.) limits access to the South Australian database to the following purposes: criminal investigation; making the information available to the person to whom the information relates; administering the database; pursuant to an arrangement with the Commonwealth, or another State or a Territory (presumably for criminal investigation); or for an investigation by the Ombudsman or the Police Complaints Authority.

Police powers in relation to mass DNA screening have been adversely commented on by the NSW Upper House Law and Justice Committee. [59] Legislation is needed to confine information gained from prison samples to forensic use.

There are also ethical issues in relation to how this information is gathered from prisoners, suspects and volunteers: first, how voluntarily can true consent be given in that situation, and second, the low level of educational achievement of many persons who come in contact with the criminal justice system is a defining factor in whether the person has understood the nature and purpose of the sampling. NSW and Federal legislation recognise the special vulnerability of Aboriginal and Torres Strait Islander suspects in relation to providing DNA samples. [60] Both the Crimes Act 1914 (Cth) and the Crimes (Forensic Procedures) Act 2000 (NSW) allow the person to have an 'interview friend' present while the procedure is carried out - so long as it is reasonably practicable. However any assistance which this affords is limited. The interview friend can be removed if he or she 'unreasonably interferes with or obstructs the carrying out of the procedure': s 55(4) Crimes (Forensic Procedures) Act 2000 (NSW). Under s 23XR(3)(a) Crimes Act 1914 (Cth) an Aboriginal or Torres Strait Islander person's right to an interview friend can be dispensed with altogether if:

the investigating constable believes on reasonable grounds that, having regard to the suspect's level of education and understanding, the suspect is not at a disadvantage in respect of the carrying out of the forensic procedure by comparison with members of the Australian community generally.

These provisions do not sufficiently address the issue of protection of Indigenous genetic information.

4. An equitable sharing in the benefits

Exploitation of indigenous genetic information is marked by two characteristics:

  • the development of genetic material for sale without any economic benefit to the people
  • lack of informed consent to the taking of DNA samples

To give an example, in 1993 scientists from Sequana Therapeutics went to the tiny Atlantic Ocean island of Tristan da Cunha where the inhabitants have an abnormally high rate of asthma. After taking DNA samples the pharmaceutical company applied to patent an 'asthma' gene. A drug that cures asthma will reap millions of dollars for the company's shareholders but the people of Tristan da Cunha will not have access to it unless they pay for it. [61] In another example, in 1997 researchers funded by the US government were forced by public pressure to withdraw the patent of a gene which might protect against HIV. [62] It had been taken from indigenous people in the Solomon Islands and New Guinea under the pretence of testing for diabetes.

Article 23 of the Draft Declaration on the Rights of Indigenous Peoples states that Indigenous peoples have the right to determine and develop their own priorities and strategies in relation to health, housing and other economic and social issues.

Australia ratified the Convention on Biological Diversity on 18 June, 1993. Its primary aims are the conservation of biological diversity, the sustainable use of biodiversity components and the fair and equitable sharing of the benefits arising out of the utilisation of genetic resources. Article 8(j) specifically recognizes the unique role which Indigenous peoples play:

Subject to its national legislation, [Contracting Parties shall] respect, preserve and maintain knowledge, innovations and practices of indigenous and local communities embodying traditional lifestyles relevant for the conservation and sustainable use of biological diversity and promote their wider application with the approval and involvement of the holders of such knowledge, innovations and practices and encourage the equitable sharing of the benefits arising from the utilisation of such knowledge, innovations and practices.

The Commonwealth Government has an identified role in managing issues in relation to Indigenous people pursuant to s 51(xxvi) Constitution. Its National Strategy for the Conservation of Australia's Biological Diversity [63] is potentially one avenue through which Indigenous peoples can achieve self-determination. Though the focus of the strategy is on the protection of Australia's unique flora and fauna, the human species is not excluded. The 'Actions' proposed in Chapter 1.8 of the Strategy (Biological diversity and Aboriginal and Torres Strait Islander peoples) include ensuring that:

  • the use of traditional biological knowledge in the scientific, commercial and public domains proceeds only with the cooperation and control of the traditional owners of that knowledge
  • the use and collection of such knowledge results in social and economic benefits to the traditional owners.

To achieve these ends the Strategy recommends:

  • encouraging and supporting the development and use of collaborative agreements safeguarding the use of traditional knowledge of biological diversity, taking into account existing intellectual property rights
  • establishing a royalty payments system from commercial development of products resulting, at least in part, from the use of traditional knowledge.

On 18 April 2002 Australia, as one of the 182 countries which has ratified the Convention on Biological Diversity, agreed on guidelines for the equitable sharing of the benefits from genetic research. [64] The benefits are to include royalties, scientific collaboration, training and profits shared between the country of origin, and local and indigenous communities. Indigenous peoples' prior informed consent must be obtained by researchers. [65] The Convention urged the Parties to pass the agreed guidelines into domestic law. Australia should legislate to protect Indigenous genetic information on these terms by ensuring that fully informed consent is obtained and that Indigenous peoples receive an equitable share of the financial and social benefits of all genetic research.

Recommendations

  • Self-regulation by researchers and industry is not sufficient to protect the interests of Indigenous people. Legislation is necessary.

  • The legislation must specifically acknowledge and deal with the vulnerability of Indigenous people to exploitation.

  • The legislation must encompass both intellectual and cultural property rights because in Indigenous culture they are indivisible.

  • Indigenous identity should be established according to Indigenous cultural protocols.

  • The gathering and dissemination of Indigenous genetic information must conform to Indigenous cultural protocols.

  • Legislation with relation to the protection of genetic information must include safeguards by which Indigenous people cannot be compelled to provide DNA samples unless truly informed consent has been obtained, not only from the individual but from his or her community.

  • Legislation to protect genetic information needs to deal more fully with the issue of suspects', prisoners' and volunteers' rights to consent to DNA sampling. This is of relevance to Aboriginal people because of their over-representation in the prison system and the fact that the majority of Aboriginal suspects are charged with summary offences only.

  • Where a person has provided genetic or genealogical information for a particular purpose, that information should be used only for that purpose.

  • Any legislation is likely to be inadequate to deal with the rapid changes in the area of genetic information. Therefore there needs to be constant surveillance of the ethical, privacy and discrimination issues. This should be carried out by a Standing Committee on which Aboriginal people and Torres Strait Islanders are represented.

  • There should also be a separate Standing Committee, with Indigenous representation, to advise government on issues such as the commercialisation of genetic research.


1. Commission on Human Rights, Sub-Commission on Prevention of Discrimination and Protection of Minorities, Working Group on Indigenous Populations, Standard-Setting Activities: Evolution of Standards Concerning the Rights of Indigenous Peoples: Human genome diversity research and indigenous peoples Note by the Secretariat, UN Doc: E/CN.4/Sub.2/AC.4/1998/4, 4 June 1998, paras 1-3.

2. ibid, para 10

3. ibid, para 13

4. ibid, para 13

5. Central Australian Aboriginal Congress 'The Vampire Project: An Aboriginal Perspective on Genome Diversity Research' (1994) 25(3) Search pp88-90

6. Venter, J C et al, 'The sequence of the human genome' (2001) 5507 Science 291, pp1304-51.

7. Redd, A.J. and Stoneking, M 'Peopling of Sahul: mtDNA variation in aboriginal Australian and Papua New Guinean populations' (1999) 65(3) The American Journal of Human Genetics 808.

8. Dodson M 'Human genetics: control of research and sharing of benefits' (2000) 1 & 2 Australian Aboriginal Studies pp56-64 at 57

9. For example, the Queensland government has committed some 92.5 million dollars over 10 years to support an Institute of Molecular Biology: Peter Beattie, Premier of Queensland, speech given at the Queensland Biotechnology Seminar, Imperial Hotel, Tokyo, 12 October 1999 accessed 27 January 2002 at http://www.thepremier.qld.gov.au/speeches/bioseminar.htm

10. Commission on Human Rights, Sub-Commission on Prevention of Discrimination and Protection of Minorities, Working Group on Indigenous Populations op cit para 29

11. On the debate of definition of Indigenous peoples see: Daes E-I Standard Setting Activities: Evolution of Standards Concerning the Rights of Indigenous People E/CN.4/Sub.2/AC.4/1996/2 10 June 1996 found at: http://www.unhchr.ch/Huridocda/Huridoca.nsf/TestFrame/2b6e0fb1e
9d7db0fc1256b3a003eb999?Opendocument
and http://www.unhchr.ch/Huridocda/Huridoca.nsf/TestFrame/
6e33127002ffb222c1256b3a00413db8?Opendocument

12. Martinez Cobo J Special Rapporteur of the United Nations Sub-Commission on the Prevention of Discrimination and Protection of Minorities, Study of the Problem of Discrimination Against Indigenous Populations E/CN.4/Sub.2/1986/7/Add.4 United Nations Publication, Sales No. E.86.XIV.3, para 379.

13. Daes E-I Standard Setting Activities: Evolution of Standards Concerning the Rights of Indigenous People E/CN.4/Sub.2/AC.4/1996/2 10 June 1996

14. International Human Rights Instruments: Compilation of general comments and general recommendations adopted by Human Rights Treaty Bodies General Recommendation VIII on the interpretation and application of Article 1, paras 1 and 4 of CERD: (1990) HRI/GEN/1/Rev.5 26 April 2001 p 180

15. Mandla v Dowell Lee [1983] 2 AC 548

16. King-Ansell v Police [1979] 2 NZLR 531

17. de Plevitz, L and Croft, L, The place of descent in proof of Aboriginality: Legal and Genetic Constructs of who is an Aboriginal person QUT Law Faculty Seminar Series, 26 October 1999; de Plevitz, L and Croft, L, Proving Aboriginality: legal and genetic constructs of Aboriginal descent' (unpublished article, presently under review)

18. Tasmania v Commonwealth (1984) 158 CLR 1 at 273-4

19. Mabo v Queensland (No 2) (1992) 175 CLR 1 at 70

20. eg Gibbs v Capewell (1995) 128 ALR 577

21. Shaw v Wolf (1999) 163 ALR 205 at 210

22. Attorney General (Cth) v State of Queensland (1990) 94 ALR 515 at 539

23. Gibbs v Capewell (1995) 128 ALR 577 at 584

24. Queensland v Wyvill (1989) 90 ALR 611 at 615

25. Attorney General (Cth) v State of Queensland (1990) 94 ALR 515

26. Bevilacqua S 'Aboriginality under the microscope' Sunday Tasmanian 17 February 2002 p 6

27. International Human Rights Instruments: Compilation of general comments and general recommendations adopted by Human Rights Treaty Bodies General Recommendation XXIII on the rights of Indigenous peoples (1997) HRI/GEN/1/Rev.5 26 April 2001 p 192

28. Bell D Daughters of the dreaming McPhee Gribble/George Allen and Unwin Sydney 1983

29. ibid

30. Hayes v Northern Territory (1999) 97 FCR 32; (2000) AILR 11; [1999] FCA 1248 para 21

31. Murrandoo Yanner v Eaton (1999) 166 ALR 258

32. Gerhardy v Brown (1985) 159 CLR 70

33. Jones S In the Blood: God, Genes and Destiny HarperCollins London 1996 pp 119-121

34. Mabo v Queensland (No 2) (1992) 175 CLR 1 at 70

35. Risk v National Native Title Tribunal (unreported, Federal Court) [2000] FCA 1589, 10 November 2000, O'Loughlin J

36. Shelton BL and Marks J 'Genetic Markers not a Valid Test of Native Identity' (2001) 14(5) GeneWatch at http://www.gene-watch.org/magazine/vol14/14-5nativeidentity.html

37. de Plevitz and Croft op cit

38. Rubibi Community & Anor v The State of Western Australia & Ors (unreported, Federal Court, 29 May 2001) [2001] FCA 607, Merkel J

39. This could also be an issue in relation to the Issues Paper definition of ethics at paras 3.4 et seq

40. Janke T, Frankel M et al Our Culture: Our Future: Report on Australian Indigenous Cultural and Intellectual Property Rights Michael Frankel & Co Solicitors Sydney 1998 p 8

41. eg John Bulun Bulun & Anor v R & T Textiles Pty Ltd (unreported, Federal Court, 3 September 1998) [1998] 1082 FCA, Von Doussa J

42. Commission on Human Rights, Sub-Commission on Prevention of Discrimination and Protection of Minorities, Working Group on Indigenous Populations op cit para 16

43. see Bell D op cit

44. s 5(1) Sex Discrimination Act 1984 (Cth); Article 2(d) and (e) Convention on the Elimination of All Forms of Discrimination against Women

45. Dodson, op cit, p 61

46. Aboriginal and Torres Strait Islander Commission 'The 1989 UNESCO Recommendation and Aboriginal and Torres Strait Islander Peoples' Intellectual Property Rights' Paper submitted by Commissioner Preston Thomas to the UNESCO/Smithsonian Conference, A Global Assessment of the 1989 Recommendation on the Safeguarding of Traditional Culture and Folklore: Local Empowerment and International Cooperation, 27-30 June 1999, Washington DC, USA found at: http://www.atsic.gov.au/default_ie.asp

47. Article 12 is presently under review in the UN working group on the draft declaration. However the changes flagged do not affect the fundamental principles of protection of culture and free and informed consent.

48. Aboriginal and Torres Strait Islander Commission 'What is Indigenous cultural and intellectual property?' Issues - Intellectual Property found at: http://www.atsic.gov.au/issues/intellectual_property/Default.asp

49. 'Iceland sells its medical records, pitting privacy against greater good' CNN.com 3 March 2000 http://www.cnn.com/2000/WORLD/europe/03/03/iceland.genes/ accessed 27 January 2002

50. Marshall E 'Iceland's Blond Ambition: A Nordic country cashes in on its isolated gene pool' Mother Jones May/June 1998 at http://www.motherjones.com/mother_jones/MJ98/marshall.html accessed 5 February 2002

51. Crimes (Forensic Procedures) Act 2000 (NSW) ss 25(c)(i) and (ii)

52. ibid ss 12(d)(i) and (ii)

53. ibid s 5

54. Office of Indigenous Policy, Department of the Prime Minister and Cabinet Indigenous people in Australia Fact sheet series June 2000

55. Australian Bureau of Statistics Corrective Services Australia September Quarter 2001 Canberra 2001 p 5

56. ibid Table 5 - 4228 Indigenous persons in prison custody; Australian Bureau of Statistics The Health and Welfare of Australia's Aboriginal and Torres Strait Islander Peoples 2001, Table 9.2 Projections of the Indigenous Population by age and sex - total 427,184

57. see for example 'Mandatory Sentencing and Indigenous Youth' in Aboriginal and Torres Strait Islander Social Justice Commissioner Social Justice Report 1999 Human Rights and Equal Opportunity Commission Sydney 2000 pp131-134

58. for example, a person may volunteer to give a DNA sample to aid in the identification of a body: s 77 Crimes (Forensic Procedures) Act 2000 (NSW)

59. 'Police face curb on mass DNA screening' The Sydney Morning Herald Friday 8 February 2002 p 5

60. see for example, assurances by the Hon. J. W. Shaw, NSW Attorney General and Minister for Industrial Relations in the Second Reading Debate on the Crimes (Forensic Procedures) Bill - Legislative Council Hansard of 20/06/2000 p 7101

61. Marshall op cit

62. eg Hernández S 'Panama: Indigenous People Fear Genetic Slavery' World News Inter Press Service 17 December 1997 http://www.oneworld.org/ips2/dec/panama3.html accessed 25 January 2002

63. Department of the Environment and Heritage National Strategy for the Conservation of Australia's Biological Diversity accessed 4 March 2002 at :
http://www.ea.gov.au/biodiversity/publications/strategy/

64. UNEP Convention on Biological Diversity Press Release: First-ever global guidelines adopted on genetic resources 19 April 2002 found at http://www.biodiv.org/doc/meetings/cop/cop-06/other/cop-06-pr-end-en.pdf. However these guidelines explicitly excluded human genetic resources.

65. Brown P 'Biodiversity deal aims to stop drug companies plundering plants' The Guardian Thursday April 18, 2002

Last updated 2 December 2001.