- Melanie Rock
Department of Anthropology, McGill University
855 Sherbrooke Street West, Montreal, Que. H3A 2T7, Canada
Eubios Journal of Asian and International Bioethics 7 (1997), 108-110.
In this paper, I critically review a legal instrument, ostensibly to protect the human genome and human rights, being drafted by the International Bioethics Committee (IBC) of the United Nations Economic, Scientific and Cultural Organization (UNESCO). The IBC aims to have the final version adopted by the United Nations in 1998, to commemorate the fiftieth anniversary of the Universal Declaration of Human Rights (1). A response to a questionnaire distributed by the IBC, published in EJAIB, charged that an earlier draft of this instrument failed to protect human rights, and specifically, that it implicitly adopted the language of eugenics (2). My purpose is to determine to what extent the latest draft, issued in December 1996, addresses these claims and elaborate on their conceptual basis.
The theoretical framework
underpinning this analysis is derived from scholarship on the
social production and use of scientific knowledge with a particular
emphasis on how bodies of knowledge articulate to people (3-6).
This approach acknowledges that culture informs how people use
technologies and that scientific technologies and procedures are
cultural artifacts. One powerful aspect of cultural schema is
their capacity to deny certain differences among people and imply
that the ongoing process of making these distinctions is inevitable.
Biocartography and biomedicine
Foucault identified the "clinical gaze" (regard) as a pivotal development in biomedicine. This "clinical gaze" requires research executed according to its precepts to maintain its integrity and expand its legitimacy (3, 7). Recent developments in genetic science have trained the clinical gaze on the cell's nucleus. Simultaneously, visions of the future and desirable features in human bodies are brought into focus. As a result, medical and administrative practices that draw upon biological knowledge may undergo transformation.
One of the most significant initiatives underway in genetic science is the Human Genome Project (HGP). Of course, much of the genetic research underway now has no formal association with the HGP. Nevertheless, its ambitious aims, with their symbolic resonance, have captured the imagination of many. This initiative has rooted the notion of a human genome, understood as our species' genetic blueprint, in many disciplines, professions and corporations around the world.
Some academics and advocacy groups have expressed concerns about who will "own" the human genome and how knowledge about it might be used (3, 7-13). Concerns extend beyond coercion, privacy and exploitation: genetic knowledge already figures in many standards that individuals, organizations and governments strive to meet (14-18). Such standards can influence decision-making processes in ways that marginalize other concerns, and ultimately, particular people.
Watson, co-credited with
discovering DNA's structure and an enthusiastic supporter of the
HGP, has hopes for genetic research that lend credence to skeptics'
fears. He envisions a day in which parents can exercise their
"right" not to have a child with certain characteristics,
such as dyslexia (19).
Geneticization and geneticism
Through a process that Lippman has termed geneticization, the qualities of human beings and other organisms appear to be, in essence, a function of genetic codes (9). Complex developments within organisms and between organisms and their environments receive scant attention, and instead causes are framed as fundamentally genetic in nature (20). Geneticization builds upon medicalization, whereby people come to perceive the body in conformity with biomedical categories (21). Geneticization also encompasses the use of genetic tools to identify differences between individuals and the reliance on genetic services, such as genetic counseling, to resolve multiple health and social problems (9, 10).
As the results of genetic research feed into biomedical practice, risk is becoming geneticized. This process is particularly manifest in the intersection between pregnancy and biomedicine (9, 10, 14-18, 22-24, 37, 38), for the prospect of preventing "undesirable" characteristics through interventions in the reproductive process holds immense appeal. This appeal is rooted in biomedicine, with its emphasis on eliminating pathology. Geneticized understandings of risk provide the rationale for prenatal diagnosis, which has become commonplace in many countries over the past thirty years. Geneticized understandings or risk may justify additional procedures designed to increase the likelihood of certain features in subsequent generations, such as selective implantation and germ-line modification. Practices that expand "family planning" to an analysis of prospective couples' genetic compatibility could also become routine (30).
While the discourse of biomedicine and genetics suggest that geneticizing risk eases decision-making, the extent to which individuals exercise self-determination varies (31-36). Geneticized understandings of risk may detract from recognizing and addressing the social conditions that largely account for variance in the extent to which genetic characteristics structure individual lives (8, 15, 17, 24). Geneticized understandings of risk may also falsely suggest a consensus about what human qualities are inherently desirable and undesirable. Framed in medical terms, a geneticized perception of risk may also sanitize the elimination of targeted groups from the human population (8, 25-29).
Critically, the identification of genetic qualities deemed undesirable relies upon the notion of a genetic norm (39). Wolf has coined the term geneticism to refer to the use of genetic notions to create and reinforce power relationships in which some dominate and others are subordinated. This conceptualization goes beyond the conventional understanding of genetic discrimination. Geneticism involves the adoption of the assumptions underlying genetic knowledge into everyday procedures, into prevailing practices for ruling.
Geneticism is akin to sexism or racism; they are intricately connected. The qualities associated with gender and the distinguishing features of a given "race" are politically, not biologically, determined. Racism and sexism stem from ideological renderings of ethnicity and gender. Acknowledging differences, however, does not entail inequality. In fact, denying differences can result in inequality. For instance, women cannot claim that they experience the world just as men do; therefore, imposing a requirement of sameness upon women can contribute to subordination, for the fictive notion of the "reasonable man" remains the norm. Therefore, genuine equality entails respectful recognition of differences (40-43). Recent developments in genetic science presume that a genetic norm exists and that human differences should conform to it. Geneticism relies on notions of normal and pathological to frame the understanding of risk associated with this knowledge, thereby functioning as a mode of social control.
In summary, geneticization
diverts attention from how social and other environmental conditions
shape the manifestation and meaning of bodily characteristics.
Geneticism remains harmful even when based on an accurate rather
than exaggerated understanding of the role of genes in the human
Protecting the human genome?
The work of the International Bioethics Committee convened by UNESCO stands to affect how human genetic research is conducted, governed and applied around the world. Below, I provide an overview of this committee's mandate and composition and critique the extent to which the committee has addressed the concerns about geneticization and geneticism.
In November 1993, the General Conference of UNESCO invited its Director-General to "undertake the preparation of an eventual international instrument for the protection of the human genome"(44, 45). In fact, a working group had already met several times during the year, and the Director-General struck a formal committee in September (45) The IBC comprises fifty members from almost as many countries. Each member was appointed by the Director-General of UNESCO. The IBC chair maintains that UNESCO is the "only forum which can ensure the necessary conciliation between progress and solidarity" in this field (46).
From the outset, the IBC has presumed that "research on the human genome and the resulting applications open up vast prospects for progress in improving the health of individuals and human kind as a whole." This premise geneticizes human development in both social and biological terms. Provisions concerning crime and its control introduced in the most recent draft epitomize geneticization: Article 6, subsection D suspends all provisions laid out in the draft instrument to protect individual rights if the ostensive purpose is to prevent or repress crime. These provisions include a rigorous and prior assessment of risks and benefits arising from research, treatment or diagnosis; prior, free and informed consent of the person concerned or their representatives; and in the particular case of research, prior review of the research protocols following relevant national and international research standards and guidelines. The suspension of these protections in the name of law and order is troubling. It ignores bias against marginalized groups manifest in the criminal justice system. It also fails to acknowledge that, in many countries, people find themselves detained and punished under the auspices of the criminal justice system when they challenge those in power. As this subsection clearly displays, not only does the draft instrument leave ample room for misleading interpretations of genetic information, facilitating genetic research and its applications rather than protecting human rights appears to be its focus.
Most problematically, the draft instrument perpetuates a mythic notion of a genetic norm. Article 3 acknowledges that external factors affect the phenotype of each individual but describes divergence from the posited norm as "mutations." Conformity to a typical genetic pattern appears as a natural objective. Article 7 explicitly enshrines the right to freedom from genetic discrimination, in precisely the limited and counterproductive fashion critiqued by Wolf (39). Genetic science is privileged as a way of knowing about human diversity, and yet the draft instrument does not focus on protecting it. In other words, the purported purpose of research on the human genome is not to affirm human diversity but to limit it, in conformity with the "best interests" of particular individuals and humankind as a whole. These best interests, interpreted within a biomedical frame, suggest that limiting departures from the presumed genetic norm protects the integrity of the human species. As a result, the draft instrument endorses an understanding of human rights that shrinks from safeguarding the prerequisite for realizing them: respect for human diversity.
What might the implications
be of the limited approach adopted by the IBC? After all, violations
of the Universal Declaration of Human Rights that came into effect
fifty years ago and other instruments in human rights law are
commonplace. Nevertheless, these instruments have become the standards
that governments strive to meet in drafting legislation (1), and
that critics point to in examining the record of governments (43,
47, 48). The measures for protecting equality and other human
rights in the draft instrument are weak. Therefore, the declaration
in its final form could represent more of a liability than an
asset for social movements and disadvantaged groups.
Chambers, in reviewing how case histories are presented in the bioethics literature, underlines the importance of perspective in writing up these narratives. He charges that biomedicine is frequently privileged in these accounts as the assumed point of view. Drawing upon anthropological theory and literary criticism, he contends that such narratives serve important rhetorical functions: they justify the perspective of the writer and obscure other ways of understanding the issues (49).
His contentions resonate in examining the instrument to protect the human genome being drafted by the IBC. The perspective of geneticists is adopted a priori, and this perspective structures how ethical dilemmas appear and appear to be resolved in the text. First, genetic science is understood as authoritative knowledge about human diversity. Second, it is implied that the human genome exists as a norm. Third, it is assumed that the human genome requires protection. Fourth, the human genome is presumed to be manifest in but distinct from individual bodies. Finally, the draft instrument suggests that ethical arguments may support efforts to alter the genetic structure of a human being, and potentially any descendants. Accordingly, the draft instrument introduces "best interests" as the fulcrum point for determining an appropriate balance between human rights and the "integrity" of the human species.
The geneticized version of the biomedical model of the human body has enormous appeal. Biomedicine is now practiced in societies around the world, in countries with diverging political systems, lending legitimacy to the quest for genetic knowledge. Treating disease and alleviating disability -- and preferably preventing both -- have widespread support. Furthermore, contemporary biomedicine and genetic science seem distant from discredited eugenic science, policies and practices. When efforts to map the human genome are closely examined, however, the central eugenic concept of a genetic norm, and thus genetic superiority and inferiority, is evident. The IBC has adopted this notion of a genetic norm and proposes measures that would further entrench it in law and policy. This declaration in its final form, judging from drafts released to date, could clear the path for geneticism and geneticization under the lofty banner of the United Nations.
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