Genomic Sovereignty and the production of Mexican Genomic Medicine.
Ernesto Schwartz Marin
Affiliated staffDr Susan Kelly, Prof Andrew Pickering, Dr Hannah Farrimond
Funded byMexican Council of Science and Technology, CONACYT
The aim of this research is to investigate an emerging socio-scientific domain in Mexico, around population genomics and its medical applications. The institutionalization of genomic medicine and the supporting concept of genomic sovereignty will be explored, in order to understand the coupling of scientific and political knowledge in the Mexican public sphere. Special emphasis is given to the bioethical practices, legislative frameworks and political negotiations that emerge with genetic research into complex diseases (laboratory ethnography), targeted to specific ethnic groups within the country, and probably among groups of immigrants abroad.
The emerging institutional framework of human bio-technology in the country, and the emerging issues concerning bio-piracy, deliberative bioethics, and scientific constructions of biological and clinical identities, are converging with the promise to transform the health system and stimulate economic development. None of the promises and statements of medical genomics come without controversies and disputes; especially since Mexican juridical understanding treats the “Mexican” genome as a public good in need of sovereign protection. The very idea of a “Mexican" genome in a multicultural country with more than 65 ethnic groups and with a complex demographic history, has given rise to serious disputes over the scientific construction of population genomics.
The governance of this new technology poses novel challenges to health, identity and democracy at large.
Describe and analyze how population genomics circulates and is articulated through the scientific and political sphere in Mexico.
Ethnographically analyze the specific practices of knowledge production and lobbying in the ELSI centre and the Illumina laboratory inside the INMEGEN.
Analyze the temporality and socio-political interrelations in the production of a governmental judgment around Mexican population genomics.
Present the regimes of practices by which and through which population genomics are framed in temporal, juridico-political and clinical terms; as a condition of possibility for medical genomics.
Situate the mechanisms and techniques of genomic sovereignty; its relation with population genomics and the possible implications for the wider politico/scientific arena.
Contrast the security dispositifs of medical genomic technologies with the metaphysical assumptions around its ELSI implementation (e.g. genetic patrimony), and present the dynamics that this circulation/confrontation generates.
MethodsThe methodology of the PhD research is multi-sited ethnography, and will comprise semi-structured interviews, participant observation, and archival research. Persons invited to participate in interviews will be legislators, policymakers, scientists, NGO staff, and ELSI researchers. I will conduct approximately 30-35 semi-structured interviews. Participant observation is being done in the Ethical, Legal, and Social Issues (ELSI) department of INMEGEN. My main activities are centred in the development of a project to enhance education, promote public engagement and bioethics. Participant observation is being undertaken in the Illumina laboratory, the leading laboratory of the so-called “Mexican Genomic Map”. These activities will comprise interviews with the technicians/scientists and note taking around the lab mainly. I will also attend scientific conferences for observation (patenting of genetic material, biological security and forums on genomic medicine and public health), all of them open to the public. Archival research will be done in the INMEGEN, The Mexican Parliament and FUNSALUD in order to recover the documents, videotapes of legislative discussions, drafts and official communications that were produced in the first period of the institution, its creation and the debates around it. Any personal documents gathered in the research will follow the same process of anonymity as stated by the author of such documents, in its informed consent format.