The protection of genetic information of Indigenous peoples
Legal
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
Special situation of Australian Indigenous peoplesInternational
human rights standards as a means of protecting Indigenous genetic
information2.
Recognition of Indigenous cultural protocols3.
Protection of genetic information provide by Indigenous people for
particular purposes
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.
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
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
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
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)
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
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.