Academic journal article Journal of Literary and Cultural Disability Studies

"The Ancestors within"; Genetics, Biocolonialism, and Medical Ethics in Patricia Grace's Baby No-Eyes

Academic journal article Journal of Literary and Cultural Disability Studies

"The Ancestors within"; Genetics, Biocolonialism, and Medical Ethics in Patricia Grace's Baby No-Eyes

Article excerpt

The article analyses Patricia Grace's novel Baby No-Eyes (1998) in light of debates about the Human Genome Diversity Project and its research on indigenous communities. Focusing on the story of a miscarried Maori baby whose eyes are removed for medical testing, Grace highlights the continuities between extractive colonial practices such as land dispossession and new, "biocolonial" activities regarding the mining of the human body. Her dramatization of culturally fraught medical encounters contributes to debates about "cultural safety" in healthcare, while the novel's exploration of indigenous genealogy, ghosting, and health advocacy challenges the HGDP's language of "vanishing communities" and "extinction." Baby No-Eyes asserts powerful arguments for more robust ethical protocols in genetic research, humanizing debates that often take place on the level of bioethics, health policy, and international law. The article concludes that the novel's ethical recommendations provide conceptual foundations that could contribute to the decolonization of genetic science.

First proposed in a 1991 Genomics article (Cavalli-Sforza et al.), the Human Genome Diversity Project (HGDP) was an attempt by human population geneticists to initiate the DNA sampling of 722 "genetically distinct" indigenous populations around the globe, enabling scholarship on the origins, history, and diversity of the human genome. Their aim was to profile and "immortalize" the cell lines of these "Isolates of Historic Interest," preserving them for use within genetic research before these valuable "populations and/or their cell lines become extinct" (qtd in Awang 123). The Project organizers made ongoing efforts throughout the 1990s to establish the necessary research methodologies, funding sources, and (belatedly) ethical protocols for such a large-scale endeavour. Meanwhile, the nascent HGDP faced immediate and damning condemnation from indigenous advocacy groups, leading to criticism from UNESCO's International Bioethics Committee in 1995 (Butler 373) and the withdrawal of financial support from several North American and European funding agencies (Barker 583).1 Indigenous groups registered a raftof bioethical issues for attention, including informed consent, the possibility of commercial exploitation through gene patenting, and, most relevant to this article, the Project's insulting rhetoric of extinction and preservation. Its scientific objectives-to trace the genetic heritage of humanity, to map histories of migration and exogamy, and potentially to contribute to future therapies for inherited diseases2-were markedly at odds with the needs of disenfranchised indigenous peoples in the present day. As Victoria Tauli-Corpuz, spokesperson for the Cordillera People's Alliance in the Philippines, put it,

After being subjected to ethnocide and genocide for 500 years (which is why we are endangered), the alternative is for our DNA to be collected and stored. This is just a more sophisticated version of how the remains of our ancestors are collected and stored in museums and scientific institutions. Why don't they address the causes of our being endangered instead of spending $20 million for 5 years to collect and store us in cold laboratories? If this money will be used instead to provide us basic social services and promote our rights as Indigenous Peoples, then our biodiversity will be protected. (26)3

Such protests exposed a stark incongruity between the resources at the disposal of the "Vampire Project" (Barker 583), as it was dubbed, and the inaccessibility of essential healthcare to many indigenous people due to poverty, driven by long histories of colonialism.

At the crux of such disputes is a series of ideological dissonances between the dominant discourses of western science and indigenous conceptions of heritage, ownership, sovereignty, and respect. While the HGDP organizers envisaged that their initiative would contribute to "fighting racism and countering Eurocentrism" (Reardon 2) by undermining genetic theories of "race," protestors placed their activities in a continuum with the violent and extractive, not to mention racist, practices of western colonialism. …

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