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Case studies |
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The three case studies we have chosen for detailed
analysis in the context of global genomic governance are the
International HapMap Project; pharmacogenomics and AD; and DNA
profiling for criminal investigation. Our three cases constitute
different, though partially overlapping fields of genomics knowledge
and applications. They display different constellations of actors,
and pose different challenges for governance, thereby exemplifying
the complexity and variety of the topic.
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The first case study
(the HapMap project) looks at the case of transnational/global
organization of a science/technology project; the second case
study, in the field of pharmacogenomics, looks at an example of
how a disease of aging (AD) is being dealt with by means of genomics
research and testing in the global/regional arena; and, our third
case study, DNA profiling for criminal investigation, examines
how a socio-political problem field, crime, is being dealt with
through genomics research and organization. |
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Case Study 1:
The HapMap Project |
In 2002, a grant
of USD 100 million from the NIH, the Canadian government, the
Wellcome Trust Sanger Institute in the UK, the SNP Consortium,
and sources in Japan and China, kicked off the International HapMap
project. Its objective is to examine 200 to 400 genetic samples
from three population groups: From Utah (northern European ancestry),
from Nigeria (Yoruba), and from eastern Asia (Chinese and Japanese).
It draws upon previous research suggesting that haplotype pattern
differences correlate partly with migration histories (The International
HapMap Consortium 2003). |
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its overall objective to learn about complex diseases, it is based
upon the so-called common disease – common variant hypothesis:
the theory that complex diseases are influenced by genetic variants
which are common in human populations. While this hypothesis has
many critics (Kittles & Weiss 2003), supporters hold that
the HapMap Project could facilitate association studies of candidate
genes and chromosome regions without knowing the functions of
the putative variants by helping to establish a “catalogue
of common variants by contributing to our understanding of the
patterns of linkage disequilibrium in multiple human populations”
(Rotimi 2004: S43). The information obtained through the HapMap
Project will be made freely available in the public domain. |
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We
will study the HapMap project as one instance in which genomic
governance is “deliberately” global, both in the way
the project is organized, and with regard to its research objective.
The point of reference is the world’s population in its
entirety; the examined populations are seen to be as close as
possible to being representative of the world’s population.
Nevertheless, this global dimension of genomic governance interacts
with particular regional concepts of identities, the right moral
conduct, and best scientific practice. We will analyze how identity
and difference of human beings are constructed through the project,
and in what ways they differ from traditional categories of “race”
and “ethnicity”. We will also raise questions of possible
group stigmatization (in a study with samples from identified
populations), the role of sex and gender, and take into consideration
ongoing discussion about the value of creating haplotype “maps”.
What sort of global genomic geography is being constructed? Where
are the points of opposition/resistance (also as compared to the
Human Genome Diversity Project)? What are the new ethical challenges
and how do we govern them? |
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Case
Study 2: Pharmacogenomics
and Alzheimer´s disease (AD) |
Pharmacogenomics
represents a relatively new field of genomics. The declared end
of the “one size fits all” approach in pharmaceutical
drug development, prescription, and therapy brings about the emergence
of new biosocialities (Rabinow 1996) that are relatively independent
from national boundaries and regional practices and knowledge.
The case of AD represents an intriguing instance of how clinical
practices and knowledges have been transformed by the influx of
genomics. |
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Controversy
has existed for a long time about whether or not AD is a distinctive
clinical entity, and to what extent its boundaries to other forms
of dementia (Lewy body dementia, vascular dementia) are fluent
(Hedgecoe 2004). Traditionally, the diagnosis of AD has consisted
mainly of ruling out alternative conditions. Whereas the lack
of clarity with regard to the distinctiveness of AD from other
diseases has not been fully resolved, the development of APOE
genotyping (a test for the existence of a particular version of
a gene – APOE - held partly responsible for the development
of AD) despite considerable resistance from the side of clinicians,
has affected both clinical practices and the relevant body of
knowledge in the field of AD . |
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Some of the unintended
consequences of the global scientific debate about the importance
of the APOE gene in the development of the disease are establishing
an agreed upon understanding of AD as a genetic disease (although
not solely genetic); the channelling of attention and research
funds to individual and “ethnic” genetic variations
(see, for example, Farrer et al 1997) both for the development
of the disease but also to responses to drugs (Tacrine); and,
significant non-corporate and corporate interest. The global practices
and knowledges of pharmacogenomics have altered clinical practices
in the field of AD and produced new infrastructures, identities,
and knowledges. In our project we will
thus address questions with regard to both pharmacogenomics in
general and AD in particular. These will include: What does the
“rationalization” of medicine, through the means of
pharmacogenomics, mean on a global scale? What does it mean when
propagators of pharmacogenomics speak of more “efficient”
drugs? Are these “global” categories? What socio-economical
impacts can be expected from a shift in pharmaceutical research
towards personalized medicine? What is the role of the pharmaceutical
and life sciences industries, and also the effect of testing on
insurance issues? |
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Case Study 3:
DNA profiling for criminal
investigation |
When
DNA evidence arrived in our courtrooms some 15 years ago, it was
labelled, “the single greatest advance in the ’search
for truth‘, and the goal of convicting the guilty and acquitting
the innocent, since the advent of cross-examination” (New
York v. Wesley 1988: 644). Genomics has entered the field of criminology
and law enforcement as a new “language of truth”,
which, despite ongoing discussions about the correct interpretation
of the use of forensic DNA data, is still seen as more reliable
than many other kinds of “evidence”. |
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Since
then, the material and discursive infrastructure that the increasing
use of DNA profiling for forensic purposes has brought about,
has significantly changed practices of criminal investigation.
The technologies and practices needed to build up and maintain
such complex systems of suspects, samples and identities, circulate
in global spaces and get adopted into regional knowledges and
practices. The use of forensic DNA banks modifies the daily construction
of such categories as “suspect” and “the convicted”
at regional levels. At the same time, emerging networks of forensic
DNA data and knowledge not only facilitate the globalization of
law enforcement but also open up to other realms of application. |
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The
use (and possible abuse) of national DNA collections for the purpose
of the victim identification after the Tsunami represents an example
of the power of genomics as a “language of truth”,
which transcends boundaries of trust and informed consent because
of the reliability ascribed to it on a global scale. In our research
project, we embrace the notion of “biological citizenship”
(Novas & Rose 2000), and the implications for such citizenship
in the emergent global discourse of genomic security with regard
to forensics and criminal investigation. We examine key questions
such as: What impact does DNA profiling in criminal investigation
have on the emergence (and/or modification) of genomics as a “global
language of truth”? How do regional practices and knowledges
interact with the global flow of forensic DNA practices and knowledges?
How do medical and non-medical applications of genomic knowledge
and practices interact? To what extent do forensic biobanks contribute
to both a regional and global “state of exception”?
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