Journal of Law, Information and Science
|
|
Home
| Databases
| WorldLII
| Search
| Feedback
Journal of Law, Information and Science |
|
Group Consent and the Nature of Group Belonging: Genomics, Race and Indigenous Rights
JASON GRANT ALLEN[*]
Current developments in international and domestic bioethics standards purport to endow socially defined groups with genetic control rights. Indigenous commentators, especially in North America, have endorsed the development of an ethical requirement for group, as well as individual, consent to participation in population genomic projects. This is a response to four concerns: controlling risks posed to groups through individual participation, protecting group-held rights in genetic information, providing better practical protection for Indigenous people and bringing consent procedures into line with Indigenous cultural values and practices. All of these concerns are valid and demand an appropriate response. It is submitted that the group consent principle may, however, endanger other aspects of the Indigenous rights project, for example efforts in Australia to move beyond the criterion of biological descent in the definition of ‘Aboriginality.’ Beyond this, it raises serious and unresolved questions about race, culture, and how we define group membership. As such, the group consent principle must be defined within acceptable parameters, lest it become antagonistic to more fundamental, if less obvious, objectives. When drafting ethical standards, it is suggested that policy-makers should be cognisant of the risk of letting race in ‘through the back door’ by well intentioned but inappropriate consent requirements.
Genomic research projects such as the Human Genome Diversity Project[1] (HGDP) and, some claim its de facto successor,[2] the Genographic Project[3] (‘Genographic’) have depended from the outset on the participation of Indigenous peoples. These groups form a significant proportion of the 722 populations deemed by the HGDP to be necessary to reconstruct human evolutionary history.[4] However both projects have met with intense and sustained resistance from Indigenous rights groups, especially in North America, and the reality is far from the collaborative effort that was perhaps naively envisaged by their proponents.[5] This is in part because Indigenous groups and bioethicists have identified material risks posed to Indigenous peoples participating in population research, for example threats of stigma and the emergent concept of ‘cultural harm.’ One of the proposed safeguards against these risks is to vest control over research participation at the group, rather than individual level. This requirement has already been incorporated into several bioethics standards overseas and in Australia, including ethical protocols of the HGDP and Genographic, and is assuming a compelling normative character.
This article identifies four kinds of arguments used to make the case for group consent: group risks, group rights, cultural justifications and pragmatic justifications. It is submitted that some of these arguments implicitly threaten other aspects of the Indigenous rights project and raise serious conceptual questions about the nature of group membership that have implications beyond the Indigenous bioethics context. The nexus between genes, culture, language and ‘race’ is not only scientifically complex, but also politically significant given the history of colonial dispossession and cultural marginalisation experienced by many Indigenous peoples. If group consent really does have the potential to exacerbate such issues of fundamental importance, it should be subjected to more rigorous scrutiny. This paper seeks to suggest some limits to the group consent requirement. It must be stressed at the outset that, in the majority of cases, approaching culturally relevant authorities for consent to request participation from group members, and deferring to their judgment, represents the best practice in research with Indigenous peoples. However, it is important that researchers have clear ethical guidance where it is most needed, in cases of ambiguity and doubt, and this paper seeks to provide some framework considerations for such cases.
The requirement for prior informed consent in human medical and scientific research is a hard-learned axiom of the 20th century. However, the principle of informed consent is highly individualistic, and reflects its situatedness in the western liberal tradition with this focus. The concept of group consent asserts that individuals that belong to certain groups need an added layer of consent: beyond the consent of the individual, the consent of the appropriate group authorities is required to protect Indigenous research participants. Henry Greely identifies group consent as one of several alternative approaches to protecting Indigenous peoples in the biomedical context. He explains group consent in the following terms:
[T]he decision whether and [on] what terms a population will participate in genetic research belongs to the group. This ... would require researchers to obtain informed consent to the research from both the participating individuals and the community to which they belong. The community would also have to be asked how it wants to handle any possible commercial value from the research... The community’s wishes would be enforced by contractual obligations imposed on anyone who seeks to use the material or data obtained from them.[6]
For funding bodies, institutional review boards and the organisers of projects such as the HGDP and Genographic, this means that they must demand compliance with the group consent requirement. For researchers, this means that once consent has been refused by the group decision-making authorities, it will be unethical to solicit participation from members of the group as individuals, accept offers of participation from them, or to conduct the proposed research with samples already collected. For individuals wishing to participate, it means that they must engage with the traditional decision-making procedures of their group before participating in genomic research projects. The case for group consent enjoys a wide support base, including Indigenous advocates[7] and proponents of the HGDP and Genographic themselves.[8] Even some critics of group consent are persuaded that Indigenous groups’ interests need some form of protection.[9] Before proceeding further to evaluating whether group consent is the most appropriate way to protect Indigenous interests, these interests must be identified. Four broad categories of interest emerge from the literature making the case for group consent, which will now be examined in turn.
First and foremost, group consent seems justified on the basis of the risks posed to Indigenous groups by participation in genomic research. Proponents argue that participation by one member of a group may pose risks to the whole group when identified. Non-participating members may share genetic characteristics with the participating individual, and may be subject to some risks simply by virtue of association. To protect itself from these risks, it follows that the group, as a whole, should have control of individuals’ participation in genetic research.
The most obvious risk is the risk of stigmatism. If a person’s genetic characteristics attract stigmatism, it will likely transfer to all people who share the genetic characteristic in question, or any other genetically-informed characteristic that is readily visible. It will also likely carry to all people socially identified with that person regardless of whether they share the characteristic or not. Joan McGregor argues that ‘if genes tell stories about a person... then because those are genes shared with her family, clan, community or group (however that is understood), that information can tell stories about [them] and be predictive of [their] future as well.’[10] One example of this is the so-called ‘warrior gene,’[11] an allele reported to be more prevalent in New Zealand Maori than in white New Zealanders. Some scientists have made indirect links between this allele and the prevalence of violence in the Maori community.[12] The potentially stigmatic effect of such research is compounded by press coverage[13] and may have wide-ranging effects on the public, such as influencing police officers and potential jurors, contributing to the possibility of governmental preventive action[14] such as interference with the parent-child relationship, or motivating discriminatory behaviour through the reinforcement of negative stereotypes. Other ‘pathological’ genes explaining alcoholism, diabetes or obesity in Indigenous populations pose similar threats of stigmatism and victim blaming.[15] As McGregor emphasises, it does not even have to be accurate information about the person, their genes, or the group for negative perceptions and stigma to result.[16]
Other critics assert that genetic research can result in so-called ‘cultural harm,’ which may pose significant threats to the group in a number ways. One form of harm is argued to result when research findings contradict the traditional beliefs and knowledge system of the very group studied. In such cases, inconsistency will generally be determined in the favour of Western science,[17] privileging the genetic paradigm over traditional knowledge paradigms, which is perceived as disrespectful and distressing.[18] This is expressed in the forceful idiom of the Indigenous Peoples’ Council on Biocolonialism (IPCB):
While the HGD Project is looking for answers about human evolution, Indigenous peoples already possess strong beliefs and knowledge regarding their creation and histories. The cosmologies of Indigenous peoples are environmentally and culturally specific and are not congruent with popular Western theories, such as the Bering Strait migration theory or Darwin’s theory of evolution.[19]
An oft-cited example of this form of harm is the experience of the Havasupai of Arizona, who gave blood to researchers on the pretext of diabetes research, but later discovered it was being used to study human origins (and the effects of inbreeding). One journalist notes ‘to tribe members raised to believe the Grand Canyon is humanity’s birthplace, the suggestion that their DNA says otherwise is deeply disturbing.’[20] This has been termed ‘inflicted insight’ by Thomas Murray.[21] Likewise, undermining beliefs about the group’s autochthony to a certain area, or proving that the DNA of ancient inhabitants differs from that of modern Indigenous inhabitants, has been feared to jeopardise land rights claims in North America.[22] TallBear argues that the credo ‘we are all related’ may, in fact, ‘usurp claims to identity and perhaps legal rights.’[23] This is echoed by the IPCB.[24]
Genomic research may also result in cultural harm in that it poses risks to internal group cohesion. Such inflicted insight may threaten the group in unexpected ways, for example by undermining traditional hierarchies and social structures based on the intergenerational transmission of sacred, often secret, traditional knowledge. Undermining traditional relationships, authority structures and values may in turn exacerbate social problems. Rebecca Tsosie argues that cultural harms may pose challenges to the group’s wellbeing and even survival: ‘any harm to culture is perceived as a direct harm to the ability of the tribe to continue into the future.’[25] To the extent that genomic research can undermine a shared identity narrative, it represents a risk to Indigenous groups. Joan McGregor argues:
How groups identify themselves as a group can be crucial to their sense of themselves and their community’s cohesiveness. Harming those beliefs by upsetting a group’s historical narrative... can be devastating to that community and have a debilitating effect on the individuals within it.[26]
The discovery that a social group straddles several genetic populations may be harmful to group cohesion, as social identities are often constructed around common origin myths. The revelation, for example, that a group is in fact a confederation of several populations, or that the Y chromosome of a given population is typical of a current or historical enemy group[27] might cause distress. Alternatively, genomic data may show that the group sampled correlates closely with a single genetic population, however certain members are ‘genetic outsiders.’[28] This sort of revelation may lead the group itself or its members to question their own social identities, perhaps choosing to reconstruct them around the scientific observations. Such data are scientifically descriptive but socially meaningless, even still they may be sloppily reported or simply misunderstood, and once the proverbial cat is out, the individual and the group concerned may make what use of the data they will.
It is also feared that the sampled material and information may be put to uses that are culturally inappropriate and offensive to donors, which is another form of cultural harm. One Indigenous leader made the following remarks:
I never imagined people would patent plants and animals. It’s fundamentally immoral, contrary to the Guaymi view of nature, and our place in it. To patent human material... to take human DNA and patent its products... that violates the integrity of life itself, and our deepest sense of morality.[29]
Vesting control of group members’ participation with Guaymi traditional authorities, to use this example, would thus seem the best way to ensure that no Guaymi’s genetic material is used for such inappropriate purposes.
Beyond the right to respond to risks, some assert that Indigenous groups possess some form of moral or sovereign rights over genetic variations that are typical of their members. The Aboriginal and Torres Strait Islander Social Justice Commissioner of the (then) Australian Human Rights and Equal Opportunity Commission (HREOC) submitted the following to an Australian Law Reform Commission inquiry into the protection of genetic information:
Australia should legislate to protect Indigenous genetic information on [the terms of the Convention on Biological Diversity (CBD)] 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.[30]
This must be seen against the background of expanding intellectual property rights in human body derivatives and the granting of these rights ever further upstream. Priscilla Wald draws on the experience of the Hagahai people of Papua New Guinea in the 1990s. When researchers discovered unusual immunological properties in Hagahai blood samples, they used the samples for research beyond that requested by and consented to by the Hagahai, and the National Institutes of Health attempted to patent a unique cell line derived from one Hagahai individual’s sample.[31] If a genetic variation is unique to, or perhaps even typical of, a given group of people, then it is prima facie arguable that some moral or sovereign right to it should accrue to that group, for example to block the acquisition of alienable, commercial rights by third parties.
The group consent model is likely to be more consistent with communal decision-making practices prevalent in Indigenous cultures, for example with the norms of Aboriginal law. This builds a powerful case to support the requirement for group consent. Many Indigenous groups have communal and hierarchical decision-making processes that are not consistent with the highly individualistic theoretical framework of informed consent. As Pam McGrath and Emma Phillips observe:
A fundamental premise of the doctrine of informed consent is that of individual autonomy which, while privileged as a core value of non-Indigenous Australian cultures, is displaced in Indigenous cultures by the honouring of the family unit and community group, rather than the individual, as being at the core of important decision-making processes relating to the person.[32]
As such, when dealing with people from such a cultural background, the most ethical approach is through the culturally appropriate authorities. According to Indigenous customary law, it may be illegal for an individual to consent to medical procedures or to participate in biomedical research without consulting family authorities and engaging in group-based decision-making procedures. The culturally appropriate clearances may extend beyond the family and be unanticipated by researchers. For example, in East Arnhem Land Aboriginal communities, a cultural authority called the Jungai exercises decision-making powers over body parts, and must be consulted before any procedure or operation is undertaken.[33] As one Indigenous survey participant told McGrath and Phillips: ‘Like if I want to get my hair cut I’ll get my Jungai to cut it, I’m not allowed to get my daughter or anybody else to do it. Or else I’ll get in trouble... Well I’ve got to pay them money... Yes, mm... That’s like, you know... pay them... breaking the law like, you know.’[34]
Concepts of property in Indigenous law may likewise tend to privilege communal and collective ownership over the rights of the individual, and impose obligations to gain approval before property is alienated or otherwise dealt with, as well as obligations of sharing. Knowingly bypassing these traditional avenues cannot be said to represent ethical research conduct because it exposes the individual to risk and disrupts the traditions of their group.[35]
Practically, the group consent model provides Indigenous people with collective bargaining power, protecting vulnerable individuals and ensuring the best deal for all research participants. Seeking out marginalised or vulnerable Indigenous individuals would be unethical, based on basic ethical principles. Even antagonists of the group consent principle would see it as poor ethical practice to engage in the targeted solicitation of unwitting, disenfranchised or impoverished individuals. This applies a fortiori once group leaders have refused to participate in the research project. Such conduct could be characterised as unconscionable, and bolsters the requirement for engaging with the relevant cultural authorities. This differs from the other justifications of group consent as it is, in some sense, an argument for group consent as a vehicle for better protecting individual rather than group interests.
This is reinforced by the practical consideration that Indigenous groups occupy marginal economic positions in most societies where they are found, and typically suffer educational disadvantages that make the technical ins and outs of genomic research harder to understand. This should put researchers on notice to make sure that whatever consent they obtain is truly informed and free, and often this may mean engaging with group authorities. These authority figures may represent the best opportunity to ‘translate’ the nature of the research, necessary to procure truly informed consent, into a paradigm that the subject understands. As Greely argues, the group control model also puts control of the potential risks and benefits of biomedical research into the right hands. Rather than dominant culture governments, bioethics panels and institutional review boards, the group consent model puts control of research access into the ‘collective hands of individual indigenous peoples.’[36]
Group consent is well established at both the international and domestic level. The North American Regional Committee of the HGDP itself incorporated it in its 1997 Model Ethical Protocol:
In addition to individual consent, the North American Regional Committee believes that a further consent process is required. The Project intends to study populations, not individuals. As a result, we believe that the populations, as well as the individuals, must give their free consent to participate... it cannot be ethically appropriate to sample some members of a group when the group itself has not agreed to participate in the Project. Such methods themselves would be another form of attack upon the autonomy of the population.[37]
This approach has been endorsed by Indigenous rights advocates in Australia, for example in the following 2002 submission of the Aboriginal and Torres Strait Islander Social Justice Commissioner of the HREOC: ‘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.’[38]
The 2000 Australian Institute of Aboriginal and Torres Strait Islander Studies Guidelines for Ethical Research in Indigenous Studies also require proof of group consent for all grant applications. The Principle of Ethical Research 11 reads: ‘Free and informed consent means that agreement must be obtained free of duress or pressure and fully cognisant of the details, and risks of the proposed research. Informed consent of the people as a group, as well as individuals within that group, is important.[39]
The Australian National Health and Medical Research Council’s 2007 National Statement of Ethical Conduct in Research Involving Humans also embodies the principle, in Guideline 3.5.11:
Consent should be sought from appropriate community representatives as well as from the individuals concerned (see paragraph 2.2.13) where:
(a) researchers propose to collect genetic material and information from individuals who are chosen because of their membership of a particular community;
(b) the research involves sensitivities for the community; and
(c) there is known to be a culturally relevant community structure in such matters.
The Genographic Project’s research protocols likewise stipulate that informed consent procedures include the possibility of communal as well as individual consent, where appropriate.[40] For example, take the following passage from the Project Protocol:
In each case, a population would be approached through a recognized leader (tribal chief, village leader, council of elders, native corporation, etc) who will be asked if the group is interested in participating in the project. If the answer is affirmative, then individuals will be asked to participate.[41]
The importance of soft-law instruments to the formation of both international and domestic norms is of particular significance in the context of Indigenous rights.[42] Group consent was recognised in the 2005 UNESCO Declaration on Bioethics and Human Rights.
Article 6 – Consent
...
3. In appropriate cases of research carried out on a group of persons or a community, additional agreement of the legal representatives of the group or community concerned may be sought. ...
Most of these instruments, however, dedicate little time to setting limits to the principle. The HGDP Protocol does recognise some problems with group definition, and accepts that not all groups are suitable candidates for the group consent model.[43] It recognises, for example, that while many Native American groups constitute organised nations with established membership criteria, others are much looser linguistic and cultural groups with no appropriate organisational structure. As such, their members constitute a group of people with some common ancestry who may share some aspects of a common culture,[44] but there is no ‘culturally relevant authority’ to exercise the group veto power. This provides some limits to the concept and thus gives some guidance as to when the group consent model is appropriate for a population. The following discussion seeks to draw out the difficulties of group characterisation and attribution of group membership to the individual.
It is argued here that some of the common justifications of the group consent model, although compelling, lead to unexpected and undesired results. As such, it is imperative that clearer limits be set to provide both the Indigenous and scientific communities with guidance. The following section will discuss the conceptual problems that arise from the four limbs of the case for group consent discussed above.
To the extent that bioethics gives the group the right to agree to or refuse participation in genomic research, it takes that same right away from the group members as individuals. If it is unethical for researchers to accept samples taken from an individual because his or her cultural leaders have vetoed the project, group consent confers power on the group at the expense of individual freedom, and this constraint of individual freedom warrants closer scrutiny. The language of group consent instruments often mask this difficulty — while nobody questions that an individual may not be compelled to participate in genetic research without his or her own and the group’s free and informed consent, can the group be compelled when he or she so wishes? First and foremost the question arises: do individuals have an interest in knowing their own genetic information, in the non-medical genomic context? If so, should that interest be recognised and given protection? In what circumstances, for what reasons, and under what conditions? And if not, why not?[45]
As Laura Underkuffler explains, our existing ethical framework is primarily concerned with protecting individual freedoms against curtailments and abuses from the group.[46] She argues persuasively that this is no reason, in itself, to reject a group consent model in Indigenous bioethics, as rights are vested at the group level in many other established contexts.[47] But in making her case for group consent, Underkuffler concedes that there may arise circumstances where the group and individual interests will clash.
She identifies three kinds of groups that may be given control rights: groups whose membership derives from the voluntary association of the individuals involved, groups whose powers are governmental in nature, and groups whose power is not governmental in nature, but whose membership is nonetheless involuntary, such as Indigenous ethnic groups.[48] The first two kinds of groups are unproblematic. An individual in the first sort of group may leave the association and seek participation in the research as an individual. If an individual wishes to break the internal rules of a group he or she has joined voluntarily, they are free to do so. Likewise, in the second sort of group, the powers of the group and the rights of the individual are constitutionally defined, and are ideally legitimated by democratic mandate. Groups of the third kind, however, have ‘neither the powers of sovereignty nor the power of exit’ to solve the problem.[49] Underkuffler proposes to solve the problem with a case-by-case analysis of the competing interests at stake.
On this approach, it seems that where the individual interest is compelling enough, the ethical choice for researchers is to disregard the group veto and allow the individual to participate. She regards this as appropriate where participation in research will yield direct and tangible benefits to the individual, for example medical benefit. So, to use the East Arnhem Land example, it would be ethical for a doctor to perform a life-saving operation, even though her Jungai disapproves. And it may be ethical for researchers to include an individual in a study if she receives incidental medical care, or stands to gain from a likely medical breakthrough as a result. However, Underkuffler seems to suggest that where the project is ‘simply genetic sampling for anthropological research’ the individual’s curiosity may well be inadequate to trump the group’s interests.[50]
Based on the same premise, there must be situations in which the group interest is not adequately compelling to trump individual curiosity, because the risks are too remote, too slight, or are not risks of a recognisable form of harm. It would seem that the ethical approach then is to measure the interests of the group — for example, with reference to the risks and rights discussed above — against the interests of the individual, wherever conflict arises. Although such a case-by-case approach is in some respects unsatisfying, it seems to be the best suggestion in the circumstances. Either way, it must be conceded that individual interests may set limits upon the ethical requirement for group consent, and preferably some framework should be provided for researchers by the normative body (such as an ethics committee with input from Indigenous authorities) to characterise and calculate the relative strength of the individual and group interests at stake in any given case. In this context, a further concretisation of the risks involved, especially risks of cultural harm, seems desirable.
A thornier question begs examination also, namely whether a purely monetary interest is sufficient to justify abandoning the group consent requirement on the same analysis. The potential for moral hazard is immediately apparent and alarming. On the one hand, if medical or other benefits can justify, in individual cases, a rejection of the group consent requirement, why can’t a purely financial benefit do the same? Removing the individual from conditions of poverty could, for example, do more for the long-term wellbeing of the individual than incidental medical care. On the other hand, offering the individual ‘money for blood’ at the expense (for example stigma or loss of commercialisation control) of the group is perhaps the worst conceivable scenario for proponents of group consent and Indigenous rights supporters generally. A detailed enquiry is needed into exactly what sort of interests are valid under a case-by-case analysis, and of course why.
It is certain that Indigenous individuals will, at times, wish to participate for the sake of their own interest against the wishes of their own cultural authorities. It is of utmost importance that researchers have certain ethical guidance in such a scenario. As Amy Harmon reports:
Results have surprised some of the Alaskans who gave [Theodore Schurr, Genographic’s North American director] their DNA. In South Kaknek, Lorianne Rawson, 42, found out her DNA contradicted what she had always believed. She was not descended from the Aleuts, her test results suggested, but from their one-time enemies, the Yup’ik Eskimos. The link to the Yup’iks, Ms Rawson suggested, only made her more curious. “We want them to do more research,” she added, offering Dr Schurr more relatives to be tested. But she will have to wait [until the objection lodged by the Alaska Area Institutional Review Board of the Indian Health Service is dealt with].[51]
While this is not an example of good genomic reporting, it does show that the individual’s interest in knowing his or her own ancestry, especially for non-medical reasons, remains to be characterised. Can any group purport to prevent the individual in this situation from discovering her ancestry, or is that information and the question of identity a private matter, discrete to the individual?[52] Can treating Indigenous individuals in this situation differently from non-Indigenous individuals be justified, or is that itself ethically problematic? This is a field of competing policy concerns overripe for inquiry. It is suggested that, although it may be necessary to de-emphasise the individual in favour of the community to make established Western notions of consent more consistent with Indigenous worldviews, we should do so only with temperance and due consideration.
As the above example suggests, beyond determining conflicts between group and individual interests, the group consent discussion requires us to engage with the question of how we define groups and characterise group membership. Having mixed Aleut-Yu’Pik ancestry, is Ms Rawson Aleut or Yup’ik for group consent purposes? Whose culturally relevant authorities do we consult? What groups, and what types of groups, are given control over research participation?[53] This leads to the deeper question of how socially constructed identities, socially defined groups and human genetic variation intersect, and the relationship between genetic variation and group belonging. These are issues that many proponents of group consent attempt to engage but fail to resolve. In seeking answers to these questions, we must look beyond Indigenous bioethics, and consider the full implications for race politics and identity dialectic more broadly.
Scientific attempts to quantify and organise genetic diversity took their modern form in the 18th Century with Carolus Linnaeus’ bi-nomial classification system. And since Linnaeus, it has been accepted that humans fit within the broader taxonomic classification of life on earth,[54] although some religious orthodoxies still dictate varying degrees of human exceptionalism. We have a scientific name as a species and are comfortable talking about inter-species genetic variation. However, while it is accepted that measurable human genetic diversity exists within the human race, exactly how to classify this variation at the intra-species level is the subject of ongoing controversy. Originally, Linnaeus classified humans into four main sub-groups, homo africanus, homo americanus, homo asiaticus and homo europeanus. This taxonomy was based on geographical origin, crude phenotypic traits such as skin colour, and supposed character traits such as cleverness and avarice.[55] Thus the first attempt scientifically to organise human variation represented a conflation of culture and biology, rather than an objective classification.[56]
In the 19th century, mainstream anthropology continued to merge blood and culture in a ‘single channel of descent.’[57] This continued well into the 20th century, even being used to justify some of that centuries numerous atrocities. Conflation is still common in popular and folk notions of ethnography. As Tishkoff and Kidd note, the lack of a clear definition of what it is we mean by ‘race’ compromises race discourse even today.[58] The combination of scientific error and political excess renders the entire field fraught and incredibly nuanced. In particular, do we mean by ‘race’ a strict biological system of classification, or do we include socio-cultural characteristics as well? In modern parlance, being ‘African American’ — or Australian Aboriginal, for that matter — may indicate more about a person’s socio-economic status and education than their ancestry.[59] Although no single definition of the race concept exists,[60] a common element of racial classification systems is that they ascribe social meaning to biological (that is genetic) characteristics. William Petersen makes a point that should be born in mind throughout the following discussion: the ‘confusion of biological and cultural characteristics, paradoxically, is the hallmark of racism.’[61]
The apparently self-evident view of discrete racial categories was challenged through the course of the 20th century. Franz Boas, for example, demonstrated the independent transmissibility of genes, language and culture.[62] The modern touchstone[63] for discussions on race and genetic variation is a 1972 analysis by Richard Lewontin,[64] in which he reported that differences within a given population actually account for 85% of human genetic diversity. Barbujani et al repeated this analysis 25 years later on a larger population sample,[65] and confirmed that the differences between human groups, however defined, represent only a small fraction of human genetic diversity.[66] The political implications of this finding were not lost on the scientists. Lewontin remarked:
It is clear that our perception of relatively large differences between human races and subgroups, as compared to the variation within these groups, is indeed a biased perception and that, based on randomly chosen genetic differences, human races and populations are remarkably similar to each other, with the largest part by far of human variation being accounted for by the differences between individuals. Human racial classification is of no social value and is positively destructive of social and human relations. Since such racial classification is now seen to be of virtually no genetic or taxonomic significance either, no justification can be offered for its continuance.[67]
Barbujani et al likewise concluded that ‘the burden of proof is now on the supporters of a biological basis for human racial classification.’[68] Although some have challenged Lewontin’s methodology,[69] and others have found that the correlative structures in the data do indeed reveal discernible, geographical clusters,[70] the Lewontin analysis remains a line in the sand, setting the terms of the modern discourse on race. It asserts that race is a social, not a biological, construct. As such, we may make social classifications of people, based on culture, language, self-identification and other social characteristics, but we may not categorise others according to their biological characteristics alone. Anything that purports to delimit group membership based on shared biological characteristics is an illegitimate resurrection of an unscientific concept that belongs dead. This argument has featured prominently in the fight against racism and discrimination since its inception.
Counter intuitively, the case for group consent may threaten this line in the sand, a result that is almost certainly unanticipated and undesired by group consent proponents. As John Moore reports, this has occurred in other Indigenous contexts: ‘Ironically, in trying to protect their political sovereignty, some U S Indian groups have seized upon the notion of blood quotum as a way of defining citizenship and protecting their sovereignty.’[71] Likewise Tasmanian Aboriginal leader Michael Mansell has said, albeit in support of a different position, that the Aboriginal movement often works on ‘one issue at a time.’[72] Interrelated issues — and their implications — are not necessarily dealt with unless absolutely unavoidable. But it is desirable that, in Australia, the full implications of group consent for concept of race and the definition of Aboriginality are addressed from the outset.
Before attempting to unravel the complex field of biodemography, a brief explanation of some terminology is useful. Population geneticists use the concept of ‘demes’ — populations of individuals more genetically similar to each other than to other individuals[73] — when describing the interrelatedness of the world’s peoples and their migratory routes from Africa in the deep ancestral past. This ‘cladistic’ (clade is from the Greek for ‘branch’) biodemography is concerned with constructing phylogenetic rather than typologic sub-taxa, that is, categories based on groups’ branching narratives rather than differences in physical traits. Describing demic groupings is an exercise that is not subject to many of the traditional criticisms of the race concept. For example, according to David Stamos: ‘In [a cladistic taxonomy], any discordance in traits between cladistic races is entirely irrelevant, as a cladistic race is not defined by a suite of character traits but exclusively by a branching point in the history of a breeding population.’[74]
The HGDP, Genographic and similar projects are concerned primarily with genetic ‘markers’ that are perhaps correlative with, but are not causative of, the visible somatic differences that inform traditional racial categorisations. Indeed, the very purpose of projects such as Genographic is to elucidate the relationship between genetic, linguistic, cultural and historical data gathered by the project.[75] As such, they are not inherently inconsistent with the Lewontin analysis. Rather, they tend to support it: The population genomicists consistently have observed that the basic conclusion from the study of differences among (self-identified) social groups is that they are small compared with the differences within the groups themselves.[76]
Unfortunately, due to the methodologies employed, the projects look for these groups by using socially defined cultural and ethnic groups as surrogates. This, in a sense, begs the question, because it a priori assumes that the socially identified groups so targeted are associated with a deme, rather than sampling anonymously (for example by drawing a geographical grid) and allowing the data to draw their own demic map.[77] At first glance, the use of socially identified groups in this manner creates the risk of reifying the race concept, in the sense of defining group membership on the basis of biology. However, correctly and carefully done, the use of a surrogate does not by itself conflate peoples and demes, nor purport to identify the essence of group membership in a biological characteristic. Given limited resources, researchers would be foolish not to control for recent immigrant populations, to avoid distortions that would render the data less useful.[78] And this would be tantamount to targeting non-immigrant populations.[79] As Morris Foster comments (in relation to the HapMap project), it is merely an exercise of convenience.
Categories such as race and ethnicity are useful as heuristic starting-points for the investigation of biological relatedness. In attempting to approximate the range of human genetic variation, social categories such as these offer a practical way of approaching the study of that diversity and of defining inclusive criteria for participant recruitment. It is this practical consideration and the imperfect (sometimes very imperfect) fit between social and genetic definitions of a population that give rise to a series of scientific and ethical issues in contemplating the development of a human haplotype map with identified populations.[80]
To the extent that anthropological assumptions will influence study design and inform research questions before any data is actually gathered, the use of social groups as surrogates for genetic population clusters in the discovery phase is suspect. Disciplinary boundaries between the hard sciences and the humanities are blurred in this way. However the heuristic use of social groups to design genomic research is not necessarily objectionable, provided groups are identified, approached and their consent is obtained in an ethical manner and findings are reported carefully and responsibly to avoid conflation. What use the individual or the group concerned makes of the demic data is its own business. However, the use of that genetic information by third parties to determine membership of social groups — imposing a social label on them by virtue of their genes — is completely unacceptable. It is argued here that the case for group consent may do exactly that, and by so doing, actually threaten the world’s Indigenous peoples in a far more sinister manner than the reinforcement of negative stereotypes or inflicted insights into the validity of the recent African origin theory.
Underkuffler’s characterisation of Indigenous groups — belonging to that troubled ‘third category’ of groups whose membership is involuntary — seems to recast a 19th century raciological paradigm in an argument that is only coincidentally sympathetic to Indigenous rights. She advocates recognition of group control rights for: ‘Groups whose powers are not governmental, but whose memberships are nevertheless involuntary or coerced on biological, practical, or other grounds.’[81] Where the individual’s somatic characteristics are unmistakable, perhaps membership is coerced. But that is the case for an ever diminishing number of people, and we are principally concerned with cladistic and not somatic characteristics — with genotype, and not phenotype — anyway.
She goes on to give the examples of ‘racial or ethnic groups, genetically linked family members, isolated populations whose contact with outsiders are controlled by leaders, and so on.’[82] She argues that ‘where a genetically identified group is present, and is the subject of genetic study, we should not be free to ignore its interests.’[83] But on Eric Juengst’s approach, this would appear unacceptable. Human demes, unlike social groups, are inappropriate repositories of genetic control rights. Because of this, the entire case for group consent is fraught:
If we mean genetic populations, or human ‘demes,’ we are not talking about the kind of human groups that can be approached for permission: they have no moral standing, deserve none, and in any case, are unidentifiable until the research itself has been conducted. On the other hand, if we mean self-identified, morally authoritative social communities, approaching them for permission would be a hollow and dangerous gesture. ... [P]romoting our genetic populations as groups with interests of their own makes no more sense than reviving old eugenic attempts to reify the concepts of ‘race,’ ‘genetic stock’ or ‘germ plasm’.[84]
Should the requirement for group consent be allowed to restrict the freedom of consenting adults, these individuals’ choice would be controlled by a group they did not choose, cannot leave, and within which they are guaranteed no rights. And through it all, we have returned to a definition of group membership that is based primarily on biological, rather than social, factors. Referring expressly to Juengst, Underkuffler finds this warning ‘curious.’[85] She argues that where genetic populations also possess adequate other hallmarks of ‘groupness,’ they should be given moral standing. Where other hallmarks of ‘groupness’ include voluntary association, it is suggested that Underkuffler’s approach is correct. However, this will effectively put the group into the first category, from which exit is possible.
Problems intensify in the case where the group is unambiguous — in the sense that it can be, in Underkuffler’s words, ‘genetically identified,’ or correlates very closely to a given deme — but the individual’s membership in the group is ambiguous. Let us suppose that Tasmanian Aboriginal cultural authorities have imposed a moratorium on participation in the Genographic Project. Might then Genographic researchers ethically accept samples from an individual with known Tasmanian Aboriginal ancestry, but who does not identify as a Tasmanian Aborigine? What about one who identifies as a Tasmanian Aborigine, but does not accept the cultural authority of the Tasmanian Aboriginal Centre, the cultural organisation most likely to exercise veto power? To this extent, the group consent debate dives headlong into a field of contested identities.
Aboriginal identity in modern Australia seems to be based upon a voluntary model of the ‘one drop’ rule. Although several definitions of Aboriginality operate in Australia,[86] two predominate. The first defines an Aboriginal person tautologically as a ‘member of the Aboriginal race of Australia,’ and is used predominantly in legislation and by the courts. The second is a more sophisticated, three-limbed working definition. It is used by executive service providers, and seems best to reconcile the interests of flexibility and certainty, and the realities of modern identity. A person is ‘Aboriginal’ if they can show descent from Aboriginal people, if they self-identify as an Aborigine, and are accepted by the relevant Aboriginal community as an Aboriginal person. To avoid the unpleasant implications of a minimum blood quotum and to recognise the social construction of identity, most people today recognise that varying degrees of Indigenous ancestry are capable of giving rise to a ‘valid’ Indigenous identity. Either way, modern Indigenous identity is a topical matter. The following comment by Gillian Cowlishaw, made in 1987, criticises the ‘binary system of racial classification’ that is prevalent in Australia, and makes a salient observation about the situation in reality:
[Referring to the binary system, by which one is either Aboriginal or white], [t]his is as true where all Aborigines have a biological inheritance from Europeans as it is in the areas where most Aborigines are “full-bloods”. In all areas there are individuals whose position is ambiguous. For a substantial minority of people, identity within this system is a consequence of their personal history, not of their biological and cultural characteristics.[87]
In the unfortunate 1998 Tasmanian case of Shaw v Wolf,[88] Merkel J of the Federal Court remarked that ‘some descent may be an essential legal criterion required by the definition in the Act’ but that, in truth, this notion of some descent was ‘a technical rather than a real criterion for identity, which after all in this day and age, is accepted as a social, rather than a genetic, construct.’[89] Indeed, some Indigenous rights scholars persuasively advocate abandoning descent as an independent limb of the test altogether.[90]
Tasmanian Aborigines constitute a highly admixed population, by virtue of one of the world’s more shocking histories of colonial dispossession, attempted genocide and assimilation. Although competing communities exist, a significant proportion of modern-day Tasmanian Aborigines claim descent from literally a handful of Aboriginal women. Despite long-standing claims of their extinction as a people, Daniels explains that in the 1966 census, 37 Aborigines were listed in Tasmania.[91] The Tasmanian government estimated at that time that around 200 people of Aboriginal descent lived in the state. Earnest research in the early 1970s traced the lines of descent from various Tasmanian Aboriginal women and estimated that 3000 Tasmanians had Indigenous Tasmanian ancestry.[92] The number of self-identifying Tasmanian Aborigines by the 2001 census was above 17,000, in a total population of only half a million.[93] Of these, many would not satisfy some of the three limbs of the test.[94]
Once it is accepted that descent is a necessary but not sufficient indicium of Aboriginality, it follows that individuals will exist that have some degree of Aboriginal descent, but are not in fact Aboriginal, either because of alternative self-identification or lack of acceptance by the relevant community. The tragic case of Darren Wouters is an example. The child of a Dutch father and Aboriginal mother, 17-year-old Wouters committed suicide in youth custody. De Plevitz and Croft explain that, to avoid another ‘Aboriginal death in custody,’ the Queensland government challenged Wouters’ Aboriginality.[95] At first instance, the Federal Court applied the three limb test and agreed, as Wouters neither self-identified as an Aboriginal person, nor was he identified by the relevant Aboriginal community as an Aboriginal person. On appeal, the Full Court reversed this decision, applying an ‘Aboriginal race of Australia’ definition on the policy basis that confused identity may have been the very cause of the suicide.[96] Like Underkuffler’s case for group consent, it seems that this decision in fact represents a step in the wrong direction for the right reasons — in order to classify Wouters as an Aboriginal person and collect data essential to addressing Aboriginal deaths in custody, the court essentially applied the one drop rule of racial classification, without regard to the will of the individual or the community concerned.
The question, then, is whether researchers affiliated with the HGDP or Genographic Project might ethically conduct research with individuals such as Wouters under the group consent model after the group with which the individual shares ancestry has refused consent. If researchers are unable to request or accept their participation, it can only be because the old race definition is being used, which in effect imposes a social classification on the individual on the basis of his biology: you cannot participate, because even though you do not identify as an Aborigine nor are affiliated with an Aboriginal community, you have ‘Aboriginal blood.’[97] To this extent, the group consent case is directly antagonistic to the case to have the independent criterion of descent removed from the test of Aboriginality. This is a fact of which proponents of both cases should be aware. It advocates a regression to the tautological definition as a ‘member of the Aboriginal race of Australia,’ which can only be rendered useful by resort to biology. It thus sends a clear message about the nature of group belonging: it is a matter of biology, as much as politics and culture. This is notwithstanding the fact, identified by Underkuffler, that it is the ‘Aboriginal blood’ that makes his or her sample interesting in the first place.
This is nonetheless suggested as an unacceptable approach. In the words of the Indigenous People’s Council on Biocolonialism, a vocal proponent of group consent: ‘Being Native American is a question of politics and culture, not biology. One is Native American if one is recognized by a tribe as being a member. And one is not necessarily a member of a tribe simply because one has Native American ancestors.’[98]
In the Alaskan Aleut example above, suppose that the Aleut cultural authorities agreed to participate with Genographic researchers, but the Yup’ik authorities refused. Would it be ethical then for researchers to accept more samples from Ms Rawson, in order to study a Yup’ik-typical mtDNA haplotype? If Juengst’s objections are taken seriously, to do otherwise is to disregard the individual’s socially constructed identity — that is Aleut — and tell her that she is ‘really’ Yup’ik Eskimo by reference to her genes. She is not ‘really’ Aleut because she doesn’t have an Aleut typical mtDNA profile. This would have sweeping implications for the way we conceptualise group membership: By constructing demes against the boundaries of real social groups and then reinterpreting those boundaries in terms of the demic results, this research suggests that the group’s “real” identity is at the genetic level.[99]
Indeed, this may even violate instruments such as the Racial Discrimination Act 1975 (Cth).[100] And yet, to accept such a sample would be to compromise the entire requirement for group consent.[101] The mtDNA or Y-chromosome haplotype information that Yup’ik tribal authorities (in the hypothetical) are trying to suppress would be collected and documented, in the case of Genographic, and a cell-line including genetic information and material associated with and shared by the Yup’ik would be ‘biobanked’ in perpetuity in the case of the HGDP. This quandary is apparently irreconcilable, and it is suggested that the only solution is to compromise the requirement for group consent.
Similar problems are encountered with the ‘nesting’ of groups. For example, one Indigenous Australian community may agree to participate in a research project, but a closely related community may refuse. In such cases of horizontal nesting, the consent of the former nullifies the refusal of the latter, as the majority of genomic information will be shared, as will all the risks of stigmatism, cultural harm and so forth. Groups may also be nested vertically, for example urban populations and overseas diasporas of Indigenous peoples, who may not necessarily identify with the ancestral group to the extent of submitting to its traditional authorities. Eric Juengst gives the following example of this problem: As long as the Americanized children of recent Hmong immigrants in Minnesota can be successfully recruited, seeking the consent of the Southeast Asian Hmong will not increase the latter’s control over their interests in this research.[102]
This does not only limit the practical effectiveness of the group consent requirement; it should be clear now that to subject American citizens to the wishes of a community on the other side of the world, solely by virtue of their race, is itself morally repugnant. Restricting one group’s participation in a study on the basis of the will of another group with shared genes also says much about how we define those groups.
The existence of trans-racial adoptees, who may or may not affiliate themselves with traditional group authorities, present similar problems. For example, imagine an Aboriginal child adopted into a white Australian family. As an adult, she or he wishes to participate in some form of genetic research: to refuse the adoptee’s participation in the project would be to treat them differently from their adoptive siblings with no apparent basis. In many cases the child, notwithstanding adoption, will consider itself as Aboriginal and be accepted by a relevant Aboriginal community as such, but there are always borderline and exceptional cases. Although unlikely, there is certainly nothing in principle against that child saying that they are culturally ‘Anglo’. Culture and genes are, after all, separately transmitted. The problem of nesting will also have implications to the concept of group rights, discussed below. Appropriate limits must be set to preserve the efficacy of the group consent requirement in appropriate cases, and bending the requirement to accommodate fundamental principles of human freedom in the rest.
Another serious problem with group consent is that it misattributes whatever rights exist in genetic diversity. It purports to give them to the group, where in truth they belong to the individual. If Lewontin’s analysis is accepted, the differences between human groups represent only a small fraction of the genetic diversity of the human species, and there is more diversity to be found among members of the same group than between different groups. Even small populations retain a substantial fraction of the global human variation, at the individual level.[103] If the individual, and not the group, is the main repository of human genetic diversity, it is unclear why control over human genetic diversity should be vested at the group level. To do so would give small social groups control rights over more genetic variation than exists between all of the world’s populations combined. While this does not affect arguments for group consent based on pragmatic or cultural justifications, it has forceful implications for rights-based arguments.[104]
With very few exceptions, genes are not confined to any single social group or any single deme, and thus cannot be said to be the ‘property’ of either group or anything akin to it. According to Henry Greely, ‘it is highly unlikely that any genetic variation is found, in the entire human species, in only one particular population. It is even less likely that it is found in all members of that population.’[105] There are no genes for being Aboriginal, Chinese, or English — only frequencies of combinations of them that are, in the aggregate, typical of being English or Chinese or Aboriginal, because of the historical co-transmission of genes, language and culture. Flora Fiddler, a member of the Waterhen Lake First Nation of Saskatchewan, Canada, explained the complex and specific histories of interaction between peoples nested horizontally with each other to Jennifer Poudrier: ‘People would socialize. They’d go from one environment to another. They’d travel to communities. They’d have extended families and they would, you know, visit that way... in different places.’[106]
As John Moore explains the implications of these histories to genetic science: ‘It seems clear that you could find any “Lakota gene” somewhere in the population of surrounding tribes like Cheyennes, Assinibonies, or Crows, and you could find any of their genes among the Lakotas. The differences are in frequency, not in the presence or absence of a gene.’[107]
Excluding exceptional cases,[108] the same ‘Lakota gene’ is likely found in a percentage of whites. As populations are nested within the broader, cladistic tree of human life, the polymorphism typical of this or that group is likely shared with populations descended from a common ancestral group. Many genes will be shared even more broadly. The ‘warrior gene,’ for example, is not unique to Polynesians, but is found in all the world’s populations, including New Zealand whites.[109] So, too, is the thrifty gene that has been implicated in Indigenous diabetes mellitus. The same fact that makes any attribution of stigma unjust makes any claim of right tenuous: there can be no property in mere frequency of occurrence. In all of this, the rights justification, too, suggests a biological definition of group membership. To vest rights to a given allele or genetic mutation in a group is to suggest that there are, indeed, genes for being Aboriginal, English or Chinese. This is not only unscientific but is politically disingenuous, particularly in relation to the definition of Aboriginality.
A further, grave difficulty with the rights justification should be mentioned, which affects the usefulness of the Convention on Biological Diversity (CBD) to promote group consent. Including human genetic diversity under the terms of the CBD is, according to Greely, the worst possible outcome for Indigenous peoples. Although it would facilitate some degree of control and benefit sharing, it would also essentially make Indigenous genomes the property of national governments. He warns that ‘[t]hat seems offensive in general; [but] it is particularly chilling in light of the history of conflict between national governments and Indigenous populations’[110] which, it might be added, continue to this day in many parts of the world.[111] As a developed nation and liberal constitutional democracy in the Asia-Pacific region, it would indeed be unfortunate for Australia to set such a dangerous precedent.
Insofar as the risks-based case for group consent relies on the concept of cultural harm, it runs the risk of patronising the people it aims to protect. As Robert John Mitchell of the Genographic Project in Australia says, the data that project provides to Indigenous people constitutes merely another ‘page in their book of knowledge’[112] — and we should not presuppose that they are unable meaningfully to use that page without leading to cultural harm. Individuals may derive interest, satisfaction and enrichment from such scientific discovery. Is not a quest to know one’s origins a deeply spiritual thing, even through the lens of a scientific paradigm?
Cultural harm may imply a conception of Indigenous culture that is static, time-frozen, and incapable of coming to terms with new knowledge, and which excludes the dynamism of some individuals affiliated with the traditional group. Should we exclude the possibility out of hand that some Havasupai, for example, may choose to understand human origins through a scientific paradigm such as the Recent African Origin and Bering Strait Migration theories, in addition to their traditional beliefs about humanity’s birthplace? In the case of some Indigenous communities, the concept of cultural harm usefully highlights the dangers they face interacting with modern societies. Such communities are likely to be remote, contact with the dominant society recent, cohesion high and acculturation low, making them perfect candidates for group consent. In other Indigenous communities, for example many in New Zealand and Southeastern Australia, the concept of cultural harm may do more harm than good, as it ignores the multiplicity of authentic Indigenous identities and cultures and fails to do justice to the realities of admixture and cultural dynamism. It implies that there is only one way to be ‘authentically’ Aboriginal — out in the bush, with no access to or interest in scientific periodicals. As Spencer Wells and Theodor Schurr write in defence of Genographic:
[T]he participation of more than 30,000 members of Indigenous and traditional groups from around the world] reflects the fact that all Indigenous peoples do not hold an identical view of genetic research and demonstrates both the desire and ability of these individuals to construct a more nuanced understanding of their history, one that takes into account both traditional beliefs and scientific evidence.[113]
A cautious warning may also be appropriate. History suggests that knowledge systems based on received wisdom fare poorly in the long term against knowledge systems based on empirical observation. In an example that springs immediately to mind, the Vatican finally conceded in the early 1990s that it wrongly condemned Galileo,[114] and that the earth does indeed revolve around the sun. The Vatican itself, one of the wealthiest and most powerful institutions on earth, has bowed itself before the advance of knowledge based on empirical observation. Against the continuing marginalisation of traditional knowledge systems in favour of the majority paradigm, scepticism and a stalwart defence of traditional knowledge is understandable. However, a more nuanced approach may be desirable, for example to emphasise the moral and spiritual value of traditional knowledge without making that value contingent on the literal truth of assertions it makes about the physical world. This applies to Aboriginal origin myths as to the book of Genesis. Perhaps when Indigenous and other non-majority knowledge systems are put on the same table as Western religious beliefs and Western science, without apology for their respective weaknesses, will their custodians consider themselves and be considered as moral and intellectual equals as well.
In conclusion, the concept of group consent is a useful and important consideration in Indigenous bioethics. It shows promise as one vehicle to protect Indigenous groups from various forms of harm, and to protect various interests in the genomic age. However, some of the arguments that are used to justify group consent raise conceptual difficulties that could be antagonistic to other interests important to Indigenous people, at both the group and individual level. The main problem with group control rights is that, if groups are not defined carefully, they could serve to reify race and impose racial identities on putative group members. Socially defined groups should be able to consent to or veto participation of members of the group, as socially defined, but not participation of members of the deme or population cluster that may or may not underlie the group. In the Australian Indigenous context, as descent is not a sufficient criterion in the definition of Aboriginality, it should not be a sufficient criterion in the context of group consent either. Self-identification with a group that possesses an appropriate consenting authority and acceptance by that group is also essential. Just as in the broader debate, it may even be more appropriate to excise the descent criterion in the group consent context.
The alternative would lead to the reintroduction of the one-drop rule, where any person with any Indigenous descent is subject to group consent procedures even though they are not associated with ‘their’ group’s decision-making authority. Their group membership would be defined in 19th century raciological terms. Researchers would have to engage in the perverse inquiry as to ‘how much is enough’ when dealing with ambiguous individuals. The individual should be allowed to determine how much is enough through choosing to identify or not to identify with the group in question, and choosing whether to obey or disregard its veto to genomic research. The group should be allowed to determine how much is enough by reference to its own traditions and values in choosing to accept the person as a member or not. This will expose Indigenous groups to risks of stigma and cultural harm — which is unfortunate — but is, emphatically, the lesser of two evils. By respecting an individual’s choice to participate — however admixed or unadmixed that individual may appear — researchers are not acting unethically, merely respecting the social construction of identity and the individual’s right to self-knowledge and self-determination.
[*] BA LLB (Hons) (University of Tasmania); LLM (Hons) (Universität Augsburg). Attorney and Counsellor-at-Law (New York). Correspondence is welcome to jgallen@utas.edu.au. This paper was made possible by the financial support of an Australian Research Council Industry Linkage Grant in conjunction with Hunt & Hunt Lawyers, Brisbane. Many thanks to the Chief Investigator, Associate Professor Barbara Ann Hocking of the Center for Law and Genetics and Honorary Research Associate at the Riawunna Center of the University of Tasmania for her supervision. Thanks also to Dr Robert John Mitchell of La Trobe University, Australia, a Principal Investigator in the Genographic Project, and to Professor Frank Vanclay, Research Fellow in Rural Sociology at the Tasmanian Institute of Agricultural Research for their comments on the manuscript. All errors and opinions are those of the author.
[1] The HGDP website is available at <http://www.stanford.edu/group/morrinst/hgdp.html> .
[2] See for example Priscilla Wald, ‘Blood and stories: how genomics is rewriting race, medicine and human history’ (2006) 40(4) Patterns of Prejudice 303, 322. While from an Indigenous perspective misgivings are understandable, comparison in these terms is probably not fair. While the projects do share some common aims in studying human origins, Genographic’s project design differs in certain key ways that make this assertion less than completely accurate. The HGDP was designed not only to trace human migratory lineages, but also to collect a diverse array of complete human genomes in a biobank, available to researchers. This would solve the ‘empty matrix’ problem, which arises when different studies use different parts of the genome from different populations — the results are, consequentially, incapable of comparison. The HGDP thus aimed to create a biobank to work as a genetic Rosetta stone for researchers. It collects blood to store immortal cell lines in perpetuity, linked to phenotypic details of the population sampled. Genographic, perhaps having learned from the mistakes of the HGDP organisers, collects only saliva samples in Australia, does not make any samples available to external researchers and collects information only on the mtDNA and Y chromosomal lineages of participants rather than their entire genome. As Spencer Wells and Theodor Schurr claim, ‘the Genographic Project is anthropological, nonmedical, nonprofit, and nongovernmental in nature. It does not involve the patenting of genetic data or the creation of cell lines for other research projects. In fact, this project is both a scientific and educational outreach effort that has learned from many of the mistakes of the HGDP organizers and other prior research projects, and we continue to work toward undertaking the project with the highest ethical and legal standards.’ See Spencer Wells and Theodor Schurr, ‘Response to Decoding Implications of the Genographic Project’ (2009) 16 International Journal of Cultural Property 183, 186.
[3] The Genographic website is available at <https://www3.nationalgeographic.com/genographic/>.
[4] Joanne Barker, ‘The Human Genome Diversity Project’ (2004) 18(4) Cultural Studies 571, 574. These populations bear discernible traces of deep ancestral migrations from Africa in the Palaeolithic, and can tell us useful information that is less available in populations descended from later population growths associated with developments such as agriculture and a reduction in genetic drift and resultant differentiation. See Luca Cavalli-Sforza, ‘Demic Expansions and Human Evolution’ (1993) 259 Science 639.
[5] John Moore, ‘Native Americans, Scientists and the HGDP’ (1996) 20(2) Cultural Survival 60, 60; Kim TallBear, ‘Narratives of Race and Indigeneity in the Genographic Project’ (2007) 35(3) Journal of Law, Medicine and Ethics 412, 417.
[6] Henry Greely, ‘Genes, Patents and Indigenous Peoples: Biomedical Research and Indigenous Peoples’ Rights’ (1996) 20 Cultural Survival 54, <http://www.culturalsurvival.org/publications/cultural-survival-quarterly/canada/genes-patents-and-indigenous-peoples-biomedical-rese> .
[7] For example the Indigenous People’s Council on Biocolonialism.
[8] For example Henry Greely.
[9] For example Eric Juengst, see Eric Juengst, ‘Group Identity and Human Diversity: Keeping Biology Straight from Culture’ (1998) 63 American Journal of Human Genetics 673, 674.
[10] Joan McGregor, ‘Population Genomics and Research Ethics with Socially Identifiable Groups’ (2007) 35(3) Journal of Law, Medicine and Ethics 356, 362.
[11] This gene on the X chromosome is responsible for the production of an enzyme that breaks down neurotransmitters such as adrenaline. The enzyme targets the neurotransmitters dopamine, epinephrine (adrenaline), norepinephrine and serotonin, all of critical importance to mood, stress and sympathetic nervous system arousal. See Sue Sabol, Stella Hu and Dean Hamer, ‘A functional polymorphism in the monoamine oxidase A gene promoter’ (1998) 103(3) Human Genetics 273. Lower enzyme levels can result in higher persistence of the chemicals it targets. Some alleles produce more of the enzyme than others, and low enzyme-producing alleles have been associated with risk-taking and gambling behaviours — see A Ibanez et al, ‘Pathological gambling and DNA polymorphic markers at MAO-A and MAO-B genes’ (2000) 5 Molecular Psychiatry 105. They have also been associated with the differential effect of childhood violence in adults — see Avshalom Caspi et al, ‘Role of Genotype in the Cycle of Violence in Maltreated Children’ (2002) 297 Science 851, 851, 853.
[12] Rod Lea and Geoffrey Chambers, ‘Monoamine oxidase, addiction, and the “warrior” gene hypothesis’ (2007) 120(1250) Journal of the New Zealand Medical Association, <http://www.nzma.org.nz/journal/120-1250/2441/> . The authors wrote ‘we reason that the MAO-A gene may have conferred some selective advantage during the canoe voyages and inter-tribal wars that occurred during the Polynesian migrations’ but were pointed in disavowing media attempts to use the hypothesis to explain ‘non-medical antisocial issues like criminality.’ However, it is difficult to see how, once the door is opened, one can prevent others from drawing obvious conclusions. The very behaviours the authors discussed — bellicosity, a propensity towards acts of bravery and valour in colonisation and warfare — would certainly classify as ‘anti-social behaviours’ today, and the authors seem to have provided a hypothesis for a genetic basis.
[13] For example, the AAP headline ‘Once were warriors: gene linked to Maori violence’ printed in the Sydney Morning Herald (online) 9 August 2006 <http://www.smh.com.au/news/world/once-were-warriors-gene-linked-to-maori-violence/2006/08/08/1154802890439.html> .
[14] Henry Greely, ‘Legal, Ethical and Social Issues in Genome Research’ (1998) 27 Annual Review of Anthropology 473, 484.
[15] For a discussion of the so-called ‘thrifty gene’, see Jennifer Poudrier, ‘The Geneticization of Aboriginal Diabetes and Obesity: Adding Another Scene to the Story of the Thrifty Gene’ (2007) 44(2) Canadian Review of Sociology and Anthropology 237.
[16] McGregor, above n 10, 362.
[17] For example, Priscilla Wald comments in the context of the Genographic Project documentary Journey of Man: The Story of the Human Species that ‘the film continually recasts indigenous and western knowledge as a distinction between story and science, and genomic knowledge emerges as the top of a hierarchy, as a corrective to the current wisdom of both indigenous tradition and archaeological evidence.’ See Wald, above n 2, 325.
[18] TallBear, above n 5, 421.
[19] Debra Harry, ‘The Human Genome Diversity Project and Its Implications for Indigenous Peoples’ in Information About Intellectual Property Rights, No 6 (Indigenous Peoples Council on Biocolonialsm (IPCB), 1995) <http://www.ipcb.org/publications/briefing_papers/files/hgdp.html> .
[20] Amy Harmon, ‘DNA Gatherers Hit a Snag: The Tribes Don't Trust Them’ The New York Times (online) 10 December 2006, <http://query.nytimes.com/gst/fullpage.html?res=9407E0DD1431F933A25751C1A9609C8B63> .
[21] Thomas Murray, ‘Learning to Deceive’ (1980) 10 The Hastings Center Report 11, 14.
[22] Tsosie, above n 17, 406.
[23] TallBear, above n 5, 421.
[24] ‘It is possible that these new “scientific findings” [such as the validation of the Bering Strait migration theory or the recent African origin of all humans, including Native Americans and Australian Aborigines] concerning our origins can be used to challenge aboriginal rights to territory, resources and self-determination.’ Debra Harry and Frank Dukepoo, Indians, Genes and Genetics: What Indians Should Know about the New Biotechnology (Indigenous Peoples Coalition Against Biopiracy, 1998) 8. In Australia, this argument makes a weaker case for group consent because the span of time in question is immense. In other parts of the Australasian region, such as New Zealand, where settlement by Indigenous people was more recent, public perceptions of Indigenous rights may be more affected.
[25] Rebecca Tsosie, ‘Cultural Challenges to Biotechnology: Native American Genetic Resources and the Concept of Cultural Harm’ (2007) 33(5) The Journal of Law, Medicine and Ethics 396, 402
[26] McGregor, above n 10, 363.
[27] For example, the mtDNA and Y chromosomal profile of certain African populations display asymmetries that suggest a scenario of conquest. See Elizabeth Wood et al, ‘Contrasting patterns of Y chromosome and mtDNA variation in Africa: evidence for sex-biased demographic processes’ (2005) European Journal of Human Genetics 1.
[28] For example, an Alaskan Aleut woman discovered that her ancestry was Yup’ik Eskimo, the one-time enemies of the Aleut. Reported by Harmon, above n 21.
[29] Isidro Acosta, Guaymi General Congress President, cited by Hope Shand, ‘Patenting the Planet’ (1994) 15(6) Multinational Monitor <http://multinationalmonitor.org/hyper/issues/1994/06/shand.html> .
[30] Australian Human Rights and Equal Opportunity Commission Aboriginal and Torres Strait Islander Social Justice Commissioner, Submission to the Australian Law Reform Commission inquiry into the protection of genetic information (13 May 2002) 10, <http://www.hreoc.gov.au/legal/submissions/genetic_information.html> (accessed 13 December 2010). This body is now known as the Australian Human Rights Commission or AHRC but the link is stable.
[31] Wald, above n 2, 321.
[32] Pam McGrath and Emma Phillips, ‘Western Notions of Informed Consent and Indigenous Cultures: Australian Findings at the Interface’ (2008) 5 Bioethical Inquiry 21, 22.
[33] Ibid, 25.
[34] Ibid. The researchers chose deliberately not to ‘doctor’ the tape-recorded interviews with Indigenous subjects into ‘white English’ for clarity or coherency, and this author chooses also to allow Indigenous voices to speak for themselves in the English in which they feel comfortable.
[35] The interface between rights justifications and cultural justifications becomes complex when consideration is given to how mainstream Australian law should recognise rights that arise under Aboriginal law. This difficulty was encountered in the copyright context, for example, in the Australian Federal Court in the case of Bulun Bulun & Anor v R & T Textiles Pty Ltd [1998] FCA 1082; (1998) 86 FCR 244 (von Doussa J). See also, Editors ––, ‘John Bulun Bulun & Anor v R & T Textiles Pty Ltd – A Case Summary’ [1998] AUIndigLawRpr 39; (1998) 3(4) Australian Indigenous Law Reporter 547. In that case, Aboriginal artist John Bulun Bulun had painted a spiritually significant site with the requisite permission from Ganalbingu cultural authorities. A print of this work was seen by a textile company and reproduced on cloth. This was a perceived cultural harm as the artworks depicted sites very sacred to Ganalpingu people. Bulun Bulun sued the company for breach of copyright, which it admitted. The more interesting question was what rights should be recognised vesting in the Ganalbingu cultural authorities, who claimed an equitable ownership interest in the copyright in the artworks. The Court was unable to recognise joint authorship rights under the terms of the Copyright Act 1968 (Cth). However, the court did recognise a fiduciary relationship between Bulun Bulun and the Ganalpingu people that arose by virtue of his use, with permission, of Ganalpingu ritual knowledge in accordance with Ganalpingu law and custom. See [1998] FCA 1082; (1998) 86 FCR 244, 262. Most interestingly, it was recognised that Equity would impose a constructive trust on Bulun Bulun to prevent him from obtaining an unconscionable benefit. This was rendered moot in this case as he successfully prosecuted the copyright infringement. Whether it would be at all appropriate to impose a constructive trust on Indigenous individuals to control the use of their own genetic information is a harder question. The broader issue of how to ‘squeeze’ Indigenous law into the dominant Australian law paradigm was also an issue in Western Australia v Ward [2000] FCAFC 191; (2000) 170 ALR 159. This concerned the incongruity between the ‘bundle of rights’ analogy in common law concepts of property and the more ‘holistic’ and integrated view of law, land and people that typifies many traditional legal systems. North J, in a judgment dissenting from that of Beaumont and von Doussa J, suggested that native title must be interpreted in a ‘way which admits the perspective of Indigenous people’ — see Katy Barnett, ‘Western Australia v Ward; One Step Forward and Two Steps Back: Native Title and the Bundle of Rights Analysis’ (2000) 26 Melbourne University Law Review 17.
[36] Greely, above n 6, 57.
[37] Human Genome Diversity Project, North American Regional Committee, ‘Proposed Model Ethical Protocol for Collecting DNA Samples’ (1997) 33(5) Houston Law Review 1431, 1440; also available at http://www.stanford.edu/group/morrinst/hgdp/protocol.html.
[38] Australian Human Rights and Equal Opportunity Commission Aboriginal and Torres Strait Islander Social Justice Commissioner, above n 30.
[39] The Guidelines are accessible at: <http://www.aiatsis.gov.au/research/ethics.html> .
[40] Genographic Project, ‘Genographic Project Ethics Overview’ Genographic Project Introduction, 4, <https://genographic.nationalgeographic.com/staticfiles/genographic/StaticFiles/AboutGenographic/Introduction/Genographic-Project-Ethics-Overview.pdf>.
[41] Genographic Project, Technical Summary of Project Protocol (North America) (University of Pennsylvania Social and Behavioral Sciences Institutional Review Board, 20 May 2005) 8, <http://www.ipcb.org/pdf_files/GP_protocol.pdf> .
[42] See Timo Koivurova, ‘Participation of Indigenous Peoples to International Norm-making from the Perspective of International Law’ (Paper presented at the annual meeting of the International Studies Association, Honolulu, 10 October 2008) <http://www.allacademic.com/meta/p69390_index.html> .
[43] Human Genome Diversity Project, North American Regional Committee, above n 37, 1441.
[44] Ibid.
[45] One option might be the constructive trust approach taken by the Federal Court to Indigenous traditional knowledge in Bulun Bulun & Anor v R & T Textiles Pty Ltd [1998] FCA 1082; (1998) 86 FCR 244. It is suggested that, in comparison with traditional knowledge such as artwork passed down through group authorities, the individual’s own genetic data is more personal to the individual and it would be less appropriate for Equity to constrain the individual’s dealing with it, for example through the imposition of a fiduciary relationship to the group or a constructive trust in favour of the group.
[46] Laura Underkuffler, ‘Human Genetics Studies: The Case for Group Consent’ (2007) 35(5) Journal of Law, Medicine and Ethics 383, 384.
[47] Ibid, 385.
[48] Ibid, 390.
[49] Ibid.
[50] Ibid, 391.
[51] Harmon, above n 21. Indeed, this is not an example of good genomics reporting. The suggestion that Ms Rawson is ‘not descended Aleuts’ does not do justice to the limited slice of information determined from her mtDNA — see note 99. It is possible, and very likely, that Ms Rawson has a number of Aleut ancestors, notwithstanding her direct matrilineal lines to women with Yup’ik typical mtDNA. However, this does not affect the argument that the individual may have a right to pursue such research for her own purposes, however great or small the scope of information the data is capable of providing.
[52] One can also imagine the thorny situation where an individual requests DNA tests to determine the question of her Indigenousness. The relevance of DNA to Indigenous identity is treated with hostile suspicion from most quarters — for example see Loretta De Plevitz and Larry Croft, ‘Aboriginality under the microscope: the biological descent test in Australian law’ [2003] QUTLawJJl 1; (2003) 3(1) Queensland University of Technology Law and Justice Journal 1. However this scenario did eventuate in Tasmania in 2002, when an individual identifying as a Tasmanian Aborigine sought to have their Aboriginal descent proved by genetic testing — see Helena Kajlich, ‘Indigenous Peoples and Genetic Population Research: Reflections on a Culturally Appropriate Model of Indigenous Participant Consent’ in Barbara Ann Hocking (ed), The Nexus of Law and Biology: New Ethical Challenges (Ashgate, 2009).
[53] Greely, above n 6, 57.
[54] Sarah Tishkoff and Kenneth Kidd, ‘Implications of biogeography of human populations for “race” and medicine’ (2004) 36(11) Nature Genetics Supplement S21, S21.
[55] Carolus Linnaeus, Systema Naturae (Typis Ioannis Thomae, 1735). He also included a fifth taxon, homo Monstrosus, which included mythical creatures such as the Patagonian giants and unfortunate children such as Peter of Hanover, presumed by the science of the day to be sub-human rather than lacking in socialisation.
[56] Tishkoff and Kidd, above n 54, S21.
[57] Doug Jones, ‘Kinship and Deep History: Exploring Connections between Culture Areas, Genes and Languages’ (2003) 105(3) American Anthropologist 501, 501.
[58] Tishkoff and Kidd, above n 54, S21.
[59] Francis Collins, ‘What we do and don’t know about “race”, “ethnicity”, genetics and health at the dawn of the genome era’ (2004) 35(11) Nature Genetics Supplement S13, S13.
[60] Tishkoff and Kidd, above n 54, S21.
[61] William Peterson, ‘Concepts of Ethnicity’ in Harvard Encyclopedia of American Ethnic Groups (Harvard University Press, 1980) 236.
[62] Jones, above n 57, 501.
[63] Wald, above n 2, 310.
[64] Richard Lewontin, ‘The apportionment of human diversity’ in T Dobzhansky, M K Hecht and W C Steer (eds) Evolutionary Biology Vol 6 (Appleton Century Crofts, 1972) 381. Lewontin analysed allele frequencies at 15 loci between individuals of the same population and individuals of other populations.
[65] Guido Barbujani et al, ‘An apportionment of human DNA diversity’ (1997) 94 Proceedings of the National Academy of Sciences USA 4516.
[66] Ibid, 4518.
[67] Lewontin, above n 64, 397.
[68] Barbujani et al, above n 65, 4518.
[69] For example A W F Edwards has asserted that Lewontin’s conclusion is unwarranted because the analysis excludes the information hidden in the correlative structure of the data by focussing only on the variation in the individual factors. This represents a clear and avoidable statistical error, which Edwards believes is politically motivated. See A W F Edwards, ‘Human genetic diversity: Lewontin’s fallacy’ (2003) 25(8) BioEssays 798.
[70] These clusters basically amount to a refined version of Linnaeus’ four-part classification: for example see W Scott Watkins et al, ‘Genetic Variation Among World Populations: Differences from 100 Alu Insertion Polymorphisms” (2003) 13 Genome Research 1607; see also Michael Bamshad et al, ‘Human Population Genetic Structure and Inference of Group Membership’ (2003) 72 American Journal of Human Genetics 578, which reported that genetic data accurately predicted assignment to clusters that corresponded to major continents. The correlative data of 60 Alu markers gave 90% accurate inference of geographical origin to Africa, Asia or Europe, and when more than 100 markers were used, samples were correctly attributed to these three geographical ‘racial’ groups with upwards of 99% accuracy. Historically admixed areas, such as southern India, produced less accurate assignment.
[71] Moore, above n 5, 62.
[72] Michael Mansell, ‘A Treaty as a Final Settlement?’ (Address presented at Treaty – Advancing Reconciliation Murdoch University, Western Australia, 26-28 June 2002) <http://www.treaty.murdoch.edu.au/Conference%20Papers/Michael%20Mansell.htm> .
[73] Juengst, above n 9, 674.
[74] David Stamos, Evolution and the Big Questions: Sex, Race, Religion and Other Matters (Blackwell Publishing, 2008) 141.
[75] Wells and Schurr, above n 2, 184.
[76] Eric Juengst, citing Luca Cavalli-Sforza. See Juengst, above n 9, 674.
[77] This is a standard method used by scientists to determine geographic variation in many other species. In fact, Alan Wilson advocated conducting the HGDP in this way, but his untimely death led to the adoption of the more targeted approach advocated by Luca Cavalli-Sforza: see Henry Greely, ‘Human genome diversity: what about the other human genome project?’ (2001) 2 Nature Reviews: Genetics 222, 224; Juengst, ibid.
[78] Greely, above n 77, 224.
[79] Afrikaners, for example, are currently Africans but it would not be instructive to include them as a sub-Saharan African population in a genomic study, given the sustained endogamy of that group over the last four centuries. See Niel Risch, Esteban Burchard, Elad Ziv and Hua Tang, ‘Categorization of humans in biomedical research: genes, race and disease’ (2002) 3(7) Genome Biology 1, 4.
[80] Morris Foster, Ethical Issues in Developing a Haplotype Map with Socially Defined Populations (19 September 2008) National Human Genome Research Institute <http://www.genome.gov/10001683> .
[81] Underkuffler, above n 46, 390.
[82] Ibid.
[83] Ibid, 388.
[84] Juengst, above n 9, 674, 675.
[85] Underkuffler, above n 46, 388.
[86] Indeed, a 1986 review of over 700 pieces of legislation found no less than 67 different definitions of Aboriginality: see John McCorquodale, ‘The Legal Classification of Race in Australia’ (1986) 10(1) Aboriginal History 7. Currently, according to John Gardiner-Garden, two main definitions operate in Australia. The first one, predominating in legislation, is basically a tautological definition of an Aboriginal person as a ‘member of the Aboriginal race of Australia.’ The other, predominating in programme administration but finding increasing favour with governments and courts (for example Tasmania) is the three-part definition. John Gardiner-Garden, ‘Defining Aboriginality in Australia’ Current Issues Brief No 10 2002-03 (Commonwealth Government, Canberra, 2003) 1.
[87] Gillian Cowlishaw, ‘Colour, Culture and the Aboriginalists’ (1987) 22(2) Man 221, 232.
[88] Shaw and Anor v Wolf and Ors [1998] FCA 389; (1998) 83 FCR 113.
[89] Ibid, 137 (Merkel J).
[90] For example, De Plevitz and Croft, above n 52.
[91] Dennis Daniels, The Assertion of Tasmanian Aboriginality From the 1967 Referendum to Mabo (Master of Humanities Thesis, University of Tasmania, 1995) 22.
[92] Ibid. The work by Bill Mollison, A synopsis of data on Tasmanian Aboriginal people to May, 1974 (University of Tasmania Psychology Department, 1974), was the first concerted study of its kind and, as part of broader developments in the period, was instrumental in debunking the myth of the extinction of the Tasmanian Aboriginal people.
[93] Australian Bureau of Statistics (ABS), ‘4705.0 – Population Distribution, Aboriginal and Torres Strait Islander Australians 2006’ (26 March 2009) <http://www.abs.gov.au/> .
[94] As Richard Flanagan reports, only 1,298 Tasmanian Aborigines applied for inclusion on the Aboriginal and Torres Strait Islander Commission electoral roll in 2002. Of these, 1,100 applications had objections lodged against them by other (putative) Tasmanian Aborigines — in fact, some 2,572 objections. See Richard Flanagan, ‘The Lost Tribe’ in The Guardian (London) Monday 14 October 2002; and Michael Mansell, ‘Tasmania: Australia’s Answer to America’s Deep South’ 21 October 2002 <www.kooriweb.org/apg/story13.html> for a reply.
[95] De Plevitz and Croft, above n 52, 6; Queensland v Wyvill [1989] FCA 485; (1989) 90 ALR 611.
[96] Attorney General (Cth) v State of Queensland [1990] FCA 358; (1990) 94 ALR 515.
[97] It would also be giving an Aboriginal community authority power over the actions of an individual it has not even accepted as a member. That person would then be subject to the disadvantages of membership but not the advantages of it.
[98] Jonathan Marks and Brett Lee Shelton, ‘”Genetic “Markers” – Not a Valid Test of Native Identity’ Indigenous People’s Council on Biocolonialism Briefing Paper (date unknown) <http://www.ipcb.org/publications/briefing_papers/files/identity.html> .
[99] Juengst, above n 9, 675. Not only is such an exercise incorrect in principle, but also practically fraught. The structural design of the Genographic Project itself demonstrates the practical inappropriateness of informing one’s social identity with the results of the research it carries out. Thus Genographic can tell you about your mother’s mother, and your father’s father — that is, half of your ancestry — but can say nothing about the other two grandparents in-between, as there is no direct chromosomal link. And it only takes into account a very small amount (about 2%) of the genome. Thus to tell a man with ‘white’ mtDNA and with a ‘white’ Y chromosome haplotype that he is not Indigenous, even while his other two grandparents are Indigenous, is nonsensical. With each generation this fraction becomes smaller and smaller — as such a man with six Indigenous great-grandparents but a direct paternal line to a European great-grandfather will not display an ‘Indigenous’ Y chromosomal haplotype, even though the bulk of his remaining genetic data will come from his Indigenous ancestors. The discovery of one’s maternal Eve or paternal Adam will thus be of limited relevance to identity formation. It could, possibly, be used to prove that one does have Indigenous ancestry (if it is accepted that a haplotype represents Indigenous ancestry), but not to prove that one does not have Indigenous ancestry. That is, it could constitute an inclusive, but not an exclusive, test, but such a test is itself of limited utility. For some groups, for example Ashkenazi Jews who define identity according to an unbroken maternal line, mtDNA could be used as an exclusive test — complicated by the possibility of historical conversion. Some groups have a conception of descent that is more spiritual than biological, in the Judeo-Christian tradition of ‘Seth begat Enosh’ — see Loretta De Plevitz and Larry Croft, “Aboriginality under the microscope: the biological descent test in Australian law” [2003] QUTLawJJl 7; (2003) 3(1) Queensland University of Technology Law and Justice Journal 105, 111. For such groups, Genographic will provide interesting information, but will not be able to affect what the participant already knows — his or her socially constructed identity as an Indigenous person.
[100] Section 9(1) provides: ‘It is unlawful for a person to do any act involving a distinction, exclusion, restriction or preference based on race, colour, descent, or national or ethnic origin which has the purpose or effect of nullifying or impairing the recognition, enjoyment or exercise, on an equal footing, or any human right or fundamental freedom in the political, economic, social, cultural or any other field of public life.’ Participation in genomic research on human origins could perhaps be characterised as a ‘feature of cultural or other public life,’ related to the right to freedom of religion, freedom of opinion and expression.
[101] Eric Juengst, ‘Groups as Gatekeepers to Genomic Research: Conceptually Confusing, Morally Hazardous, and Practically Useless’ (1998) 8(2) Kennedy Institute of Ethics Journal 183, 193.
[102] Ibid.
[103] Barbujani et al, above n 65, 4518.
[104] To the extent that Aboriginal law recognises group rights and mainstream Australian law does not, it might also force an examination of the extent to which white law will defer to Aboriginal law. It is suggested that Australian law should recognise only individual rights to genetic information if it recognises any such rights at all. Where the individual wishes to vest these in the group, that should be recognised by mainstream Australian law, but this should never be forced.
[105] Greely, above n 14, 478.
[106] Poudrier, above n 15, 250.
[107] Moore, above n 5, 62.
[108] Such as the Hagahai example. However that gene was found in a Hagahai individual, and was not possessed by all the Hagahai group. As such it still does not follow that control or ownership should be vested at the group level on a rights-based analysis.
[109] In fact, the ‘warrior gene’ alleles are found in 34% of Caucasian males, 56% of Maori males (defined by having ‘at least 1 Maori parent’) and 77% of Chinese males. Lea and Chambers, above n 12, 2.
[110] Greely, above n 6, 56.
[111] See Barbara Ann Hocking, Scott Guy and Jason Allen, ‘Three “Sorries” and You’re In? Does the Prime Minister’s Apology Presage Constitutional Recognition?’ (2009) 11(1) Human Rights Review 105.
[112] Interview with Robert John Mitchell (Melbourne, 17 February 2009).
[113] Wells and Schurr, above n 2, 185.
[114] ‘Vatican Science Panel Told by Pope: Galileo was Right’, The New York Times (online) 1 November 1992, <http://query.nytimes.com/gst/fullpage.html?res=9E0CE1DA1F31F932A35752C1A964958260> .
AustLII:
Copyright Policy
|
Disclaimers
|
Privacy Policy
|
Feedback
URL: http://www.austlii.edu.au/au/journals/JlLawInfoSci/2010/12.html