Book Reviews

Wessen Gene, wessen Ethik? Die genetische Diversität des Menschen als Herausforderung für Bioethik und Humanwissenschaften

ARND WASSERLOOS

Berlin, Weißensee Verlag, 2005. 279 pp.

ISBN 3 89998 074 3

Race to the Finish: Identity and Governance in an Age of Genomics

JENNY REARDON

Princeton, New Jersey, Princeton

University Press, 2005. 237 pp.

ISBN 0 691 11857 4 (paperback)

In 1991 a number of population geneticists proposed the Human Genome Diversity Project (HGDP) as a companion to the large-scale Human Genome Project, which had already been launched the year before. While the latter was vigorously pursued and finally met with success in 2000 when the first drafts of the human genome were published, the much smaller parallel project on human genetic diversity never moved beyond the planning stage. Those who suggested organising the HGDP— prominent researchers like Luigi Luca Cavalli-Sforza, Allan Wilson and Mary-Claire King—had nonetheless been inspired by high hopes and ambitions. The aim was to set up an international repository of cell lines and DNA and a corresponding database freely accessible to scientists for the study of the genetic diversity of humankind. Although the basic similarity of the genome across members of the human species stands as a symbol for the unity of the species (the standard used in the Human Genome Project is actually a ‘Caucasian’ genome and therefore not fully representative of the whole of humanity!), the minor genetic variations between various ethnic groups and populations are also of considerable potential interest. They can shed light on the still obscure branching patterns and migrations that characterise the ‘bio-history’ of humanity and provide clues to genetic factors in disease causation and differences in the effects of pharmaceuticals. In a meeting held in 1993, the organisers of the HGDP decided that they needed to collect and analyze samples (blood, hair or other tissue) from about 500 populations scattered over the entire globe, especially from indigenous peoples that might be on the verge of disappearance through extinction or mingling with other groups. These samples would be characterised by using a fixed set of genetic markers in order to avoid the so-called ‘empty matrix problem’, which would ensue when researchers use different markers for different populations. It was anticipated that the project could be completed within five years and would only cost about $25 million, a fraction of the estimated total costs of the Human Genome Project ($3 billion). Thus the expected financial burden was just peanuts, comparatively speaking. So what went wrong with the project?

Virtually from the outset, the HGDP was confronted by scientific disagreements on the best way to go about sampling and by disciplinary tensions between human population genetics and (physical) anthropology. The project really got into stormy weather, however, when in 1993 a critical NGO like Rural Advancement Foundation International (RAFI; now ETC group) and several representatives and organisations of indigenous peoples started to call into question the beneficent aims of the HGDP. Charges were that the project amounted to a new edition of scientific racism and colonialism, this time acting on the molecular level. Project organisers were said to be more concerned about saving ‘vanishing’ genes than about saving ‘vanishing’ peoples. Once more, so the accusation went, the native peoples of the developing world were being treated as mere objects rather than as sovereign nations who are entitled to participate in the design of research that might have a strong impact on their future. It was also suggested that the HGDP would be a prelude to the commercial exploitation of the genomes of indigenous peoples by western biotech and pharmaceutical companies. This fear was fuelled by a few notorious cases in which cell lines and substances drawn from the blood of native inhabitants of Papua New Guinea and Panama were filed for patenting in the USA. Although the organisers of the HGDP vehemently denied pursuing any commercial objectives, they were unable to exorcise the ghost of ‘biocolonialism’ and ‘biopiracy’. The public relations disaster was definitive in December 1993 when the World Council of Indigenous Peoples dubbed the HGDP the ‘Vampire project’. In response to such criticism and to demonstrate their good intentions, the North American Regional Committee of the HGDP, led by Stanford law professor Henry T. Greely, developed the so-called Model Ethical Protocol (MEP) for Collecting DNA Samples. An innovative element of the MEP was the ‘group consent’ that would be required as a vital component of the informed consent procedure to complement the usual practice of obtaining approval from individuals only. Even this remarkable bioethical innovation, however, proved incapable of regaining the trust from many organisations of indigenous peoples. The HGDP suffered another setback when the US National Research Council (NRC) published its long-awaited evaluation report in 1997. Although the report advised government funding for the HGDP, its half-hearted recommendations were couched in rather ambivalent terms. The hesitations were caused by scientific disagreements on the proper design of the project and its failure to promise direct medical benefits.

Wasserloos and Reardon have each written a special monograph on the scientific, ethical and political debates surrounding the HGDP and undertake to draw more general lessons from its unfortunate fate. Both agree that the attempt to set up the HGDP, despite its ultimate lack of success, was a valuable experience because it raised very challenging and fundamental questions that needed to be raised and that are still relevant for any new initiatives in the scientific study of human genetic diversity. The two authors approach this subject matter from different angles. Reardon takes her theoretical bearings from what she calls the ‘co-production framework’ deriving from a special school in STS (Science and Technology Studies) that is heavily influenced by the work of Bruno Latour and Sheila Jasanoff. Wasserloos, by contrast, discusses the scientific questions thrown up by the HGDP without exhibiting a particular commitment to a specific school in STS and generally endorses fairly liberal positions in bioethics and political philosophy. Confronting the two approaches with each other may stimulate our critical reflection on the scientific, ethical and political pitfalls that lay in store for genomic research into different human groups and populations.

One notable difference between Wasserloos and Reardon concerns the alleged scientific obsolescence of the category of race. The standard historical interpretation is that after the Second World War racial theories were not simply rejected on political grounds to avoid a repetition of the type of crimes perpetrated by the Nazis, but that there were indeed sound scientific reasons to do so. The paradigm shift occurring in biology from typological to ‘populational’ thinking entailed that the division of the human species in discrete and distinct races no longer made scientific sense. Race was not a biological phenomenon, it was claimed, but a social construct. Hence it was thought to be more appropriate to speak of ‘ethnic groups’ rather than ‘races’. One of the most active to spread this new scientific gospel about the biological meaninglessness of the received racial categories dividing humankind has been HGDP protagonist Cavalli-Sforza himself. Wasserloos also adopts this position and invokes the old idea of Ideologiekritik when he remarks that scientific disciplines become more vulnerable to ideological distortions the more their objects of investigation touch on the social interests that people hold dearly, as is illustrated by the tenacity of racial theories (p. 11). For Reardon, however, this form of critique of ideology is itself an outdated legacy of Enlightenment thinking, which in her view naïvely opposes knowledge and truth against power and prejudice. In her book she offers a reconstruction of the post-war debates among geneticists and anthropologists on the question of race, arguing that the majority of the participants did not in fact reject the notion of ‘race’ as an analytical category. In other words, along with some revisionist historians of biology, she claims to have shown the ‘persistence of race’, despite the fact that modern western societies like to see themselves as colour-blind. Such an outcome, she adds, is only what you would expect to find once you adopt the co-production framework of modern STS. This framework holds that the natural order (or scientific knowledge) and the social order are produced simultaneously: ‘Human genetic diversity cannot become an object of study absent social and moral choices about what we want to know and who we want to become’ (p. 8). Presumably, then, the proponents of the HGDP were extremely naïve when they attempted to chart the genetic diversity of groups ‘in nature’ without taking into account that this question of scientific ordering is inextricably linked up with the political and cultural ordering of groups ‘in society’. Reardon also uses the co-production framework to illuminate the virtually insurmountable difficulties with which the implementation of the Model Ethical Protocol was to be confronted.

To address the widespread criticism from indigenous peoples, the Model Ethical Protocol (MEP) put special emphasis on group consent. The avowed rationale for group consent was that the HGDP aimed at studying populations and its outcomes could therefore affect the interests of such populations as a whole rather than their individual members only (e.g., effects of discrimination and stigmatisation ensuing from the demonstrated prevalence of certain genes). Hence the MEP sought to obtain informed consent from the populations to be sampled ‘through [their] culturally appropriate authorities’. Although group consent was just a complement and by no means a substitute for individual consent, the proposal attracted new critics from yet another quarter for whom this departure from the individualistic slant of Western bioethics went much too far. In many respects the debate on group consent resonates with the wider debate within political philosophy between liberals and communitarians. The liberal criticism of group consent holds that it would be unduly paternalistic to first obtain permission from the ‘culturally appropriate authorities’ of, say, the Apaches before giving individual members of the tribe the opportunity to participate in the proposed project. Liberal critics also pointed out that many of the allegedly collective hazards of genomic research (e.g., the risk that scientific findings might undermine the cherished origin stories of the population) are not the type of risks that groups can legitimately invoke to be protected from. While Reardon seems to incline more to the communitarian side of the debate (although she bemoans the neglect of issues of power among communitarians), Wasserloos effectively endorses the liberal position on group consent. He even considers this procedure a violation of the individual's right to give informed consent: individuals eager to participate in a particular project could be prevented from doing so by the lack of the group approval. However, as Henry Greely, the drafter of the MEP, has pointed out, there is little principled difference with the situation in Western countries where research projects involving human subjects first need approval from Institutional Review Boards before individuals may decide whether or not to participate (Greely, 2001, p. 793). Rejecting group consent as a legal obligation, Wasserloos is not opposed to noncommittal forms of community consultation on research projects.

Apart from evoking a principled dispute along the liberal-communitarian divide, the projected procedure of the MEP for obtaining group consent also ran into other difficulties. One can readily imagine that it will not always be easy to identify the ‘culturally appropriate authorities’ who are to give consent on behalf of the entire population, especially if there is no community consensus on this matter. Moreover, the delimitation of the boundaries of the relevant group itself is also extremely problematic. As a matter of course, local groups are nested into larger populations of wider geographical scope. Greely illustrates this problem with a graphical example: ‘Is the relevant group a particular village in the Navajo Nation (the proper term for the Navajo Reservation)? Is it the entire Navajo Nation? Is it all Southwestern Native Americans who speak languages related to Navajo, thus encompassing the Apache? Is it all Native Americans who speak a language in the NaDene language family, from inland Alaska to the Southwest? Or is the relevant group all Native Americans?’ (Greely, 2001, p. 791). There is also another aspect to this problem. Reardon recounts in her book that organisations of Native Americans were concerned that, according to the MEP, questions of how to define the relevant group would ultimately be decided by the North American Regional Committee of the HGDP, thus threatening the hard-won sovereignty rights of indigenous populations to define their own members (p. 121). The scientists, lawyers and ethicists sitting on this committee rather than the Native Americans themselves would decide on their identity.

The problem of defining relevant groups within the HGDP runs even deeper. Although the Diversity Project aimed at charting the genetic variation existing within the human species, it used a sampling procedure in which the populations to be included in the project were first selected according to linguistic and other culturally meaningful criteria. This approach was favoured by Cavalli-Sforza, but had been opposed by his colleague Allan Wilson, who advocated a random-sampling, grid-based strategy. After Wilson's untimely death in 1991, however, Cavalli-Sforza's view prevailed. The superimposition of social/cultural and biological categories resulting from his approach would create serious confusion with regard to the status of the human groups to be studied in the HGDP. Eric Juengst, the first director of the ELSI programme of the Human Genome Project who also served on the NRC committee evaluating the HGDP, chose precisely this ambiguity as the prime target of his criticism. According to Juengst, the HGDP was confronted with a basic dilemma. If ‘human groups’ are to be understood in a biological sense (as genetic populations or ‘demes’), then they have no moral standing and cannot be approached for obtaining consent (besides, they can be known only after the research has been completed). If, on the other hand, ‘human groups’ are to be understood in the social/cultural sense, then the practical implication of approaching them for permission would be that such ‘ethnic’ groups do indeed have a genetic basis, thus contradicting the anti-racist message the HGDP organisers wanted to spread: ‘[I]f [population genomics] begins by describing our differences, it inevitably will produce scientific wedges to hammer into the social cracks that already divide us’ (Juengst, 1998, p. 675–6). For Juengst, the way out of the dilemma was to follow the example of field biologists studying animal populations and develop methods for the assessment of genetic diversity ‘that do not have to start with the “phenotypes” of the social landscape’ (ibid., p. 677). In other words, his plea was to decouple the biological from the social/cultural dimensions.

Both Wasserloos and Reardon extensively discuss the dual meaning of human groups in the biological and social/cultural (or political) sense as a key issue for the HGDP. Much to his own surprise, Wasserloos found that the ethical problems connected with charting the genetic diversity of humankind were closely interwoven with the theoretical and methodological questions raised by this project, and especially with the ‘dual reference to populations as genetic and political units’ (p. 185). Reardon would surely have agreed, but she uses the STS co-production framework to add a rather special gloss to this problem. She suggests that the debate on group consent involved nothing less than ‘a fundamental debate about the order of nature and society’ (p. 114). The co-production framework holds that ‘natural and moral order [are] inextricably entangled, making it impossible to construct one without implicating the construction of the other’ (p. 162). Thus in Reardon's view, any attempt to dissociate the biological from the social/cultural, as proposed by Juengst, would be doomed to futility. She emphasises that there is ‘no neutral, apolitical ground to which scientists can retreat to conduct their research’: ‘[R]ather than building a world free of race, population-based genomics research represents a new chapter in long-standing efforts to define the proper uses and meanings of racial categories’ (p. 163).

I find this view deeply disturbing. It would seem that the co-production framework, as it is interpreted by Reardon, does not offer any viable prospect of successfully combating scientific racism. On the contrary, it accepts such a form of racism as inevitable. Reardon's response, with her co-authors Brady Dunklee and Kara Wentworth, to the provocative essay by Armand Marie Leroi (2005) on the Op-Ed page of The New York Times, is highly revealing in this respect. Leroi had attacked the idea that human races are only social constructs as the politically correct consensus of the past 30 years and argued for the recognition that races are (biologically) real. In their contribution to the ensuing debate, Reardon and her co-authors asserted that it is not so much a particular answer to ‘the race question’ (such as Leroi's), but the bifurcated conceptual framework separating natural order from social order and science from ideology that presents ‘a great danger to scientific inquiry and democratic governance’ (Reardon, Dunklee & Wentworth, 2005). The authors apparently accepted as given the fact that ‘genomics is remaking the human along changing axes of racial differentiation’, however ominous this may sound to ordinary citizens. The bifurcated conceptual framework is condemned as ill-equipped to understand, and intervene in, this ‘remaking’ effort. The authors had no doubt that the co-production framework would do a better job.

It is instructive to contrast the response of Reardon et al. (2005) with Richard Lewontin's contribution to the debate. Not only does the latter attempt to refute Leroi's biological views on race (convincingly in my eyes), he also offers an explanation why the abandonment of race has never been complete in the case of the human species: ‘There has been a constant pressure from social and political practice and the coincidence of racial, cultural and social class divisions reinforcing the social reality of race, to maintain “race” as a human classification. If it were admitted that the category of “race” is a purely social construct, however, it would have a weakened legitimacy. Thus, there have been repeated attempts to reassert the objective biological reality of human racial categories despite the evidence to the contrary’ (Lewontin, 2005).

Lewontin's explanation of the tenacity of beliefs in the biological reality of human races is an example of Ideologiekritik that is also endorsed by Wasserloos. Their criticism of racial theories is not merely an instance of ‘debunking’ so much despised by Reardon (p. 8) because they do not simply attempt to discredit these views by pointing out the social interests that are served by them, but also engage in extensive substantive criticism. For Reardon, however, even such a more nuanced critical exercise has become obsolete with the arrival of modern forms of STS that highlight the co-production of natural and social order. If this new approach leaves us no other choice but to accept scientific racism as inevitable, though, we may find the price for adopting it too high.

Henk Van Den Belt

  Applied Philosophy

  Wageningen University

  The Netherlands