Jennifer Hamilton/Vitality of Difference

Project 1: The Vitality of Difference: Post-HapMap Genomics and Ethics
Prior to accepting my position at Hampshire, I spent three years as a post-doctoral researcher in the Center for Medical Ethics and Health Policy at Baylor College of Medicine (2004-2007). It was during this time that my research transitioned from an explicit focus on the production of indigenous difference in the law to a concern with the terrain of difference in human genomics and ethics. The final chapter of my book, “Of Caucasoids and Kin: Kennewick Man, Race, and Genetic Indigeneity in Bonnichsen v. United States,” written after my post-doctoral work, provides a discussion of federal legal decisions as they relate to ideas of genetics, indigeneity, and identity at the beginning of the twenty-first century; it also serves as an important marker of how concepts of differences can be productively linked through an analysis of law and the life sciences.

Part of my time at Baylor was spent working on a collaborative bioethics project sponsored by the National Human Genome Research Institute (NHGRI) entitled “Indian and Hindu Perspectives on Human and Genetic Variation Research.” Part of the Ethical, Legal, and Social Implications (ELSI) Program, the project used qualitative ethnographic methods to understand views of health and genetics among Houston’s diasporic South Asian communities in the context of the International Haplotype Map Project (HapMap). Begun in 2002 and completed in 2005, the HapMap is a public project which proposes to map genetic variation among different human groups in an attempt to provide researchers with a tool to uncover genetic causes for common diseases such as cancer, diabetes, and heart disease.

While committing a portion of my time to this collaborative study, I also pursued independent ethnographic research on the HapMap and its bioethical formations in a project called “The Vitality of Difference.” As this title indicates, I focused on the production and mobilization of difference—especially but not exclusively racial difference—at the nexus of large-scale gene mapping and human disease research. I explored how categories of race and ethnicity are configured as biologically meaningful and therefore as having important diagnostic and therapeutic implications for population health. My work centered on the question why and how, and to what effect, human difference—including understandings of race, ethnicity, ancestry, genetic variation, and population—has come to occupy a central place in our current understandings of health and biomedicine, particularly in the intersecting fields of population genetics and population health. I further explored the ways in which racial difference is made viable through appeal to an ethics and a pragmatics that attempt to reorder difference along more politically palatable lines. Currently, I have two articles in preparation based on this research. In the first, “‘Frozen Moments’ in the HapMap: Some Ethnographic Speculations on Race, Human Genetic Variation Research, and Biomedicine,” I investigate how categories of race are configured in contemporary human genetic variation research, specifically in the context of the HapMap. I further argue that ethical design and practice often materialize racial difference in the very ways HapMap researchers seek to avoid. A shorter version of this article, “Revitalizing Difference in the HapMap: Race, Biomedicine, and Contemporary Human Genetic Variation Research,” was published in the Journal of Law, Medicine &amp; Ethics in 2008. In the second, related article, “From Practice to Substance: The Emergence of ‘Ethical Provenance’ in Contemporary Human Genetic Variation Research,” I ask how certain processes are newly translated as ethical around the collection of biogenetic substances in human genetic variation research and how the explicit foregrounding of ethical concerns around population research differently shapes the nature of biomedical inquiry and its objects.

My current project, “The Vitality of Difference: Post-HapMap Genomics and Ethics,” is a continuation of this earlier post-doctoral research. Since its initial completion in 2005, the HapMap has had a broad impact on human genetic variation research. My two key areas of investigation are 1) how samples collected under the auspices of the HapMap have been used in broader research contexts and, 2) how advances in sequencing technologies and developments in bioinformatics are fueling emergent sectors of what scholars call the “bioeconomy.” Using qualitative ethnographic methods, I am exploring the following questions:

-the role of ethics in shaping scientific process, technological innovation, regulation, and value in the political economy of the life sciences

-the emergence of health-oriented consumer genetics in the context of personalized medicine

-the role of race, gender and ethnicity in the genomic sciences