Personalized Medicine at the AAAS: Opening Up the Black Box

Many, along with Francis Collins, director of the NIH, suggest that we’ll be seeing $1,000 genomes within the next five years. In such a world, how do we plan for this future?

The AAAS, at their meeting on personalized medicine at the end of last month, clearly aimed to address this question. On the agenda were talks about comparative effectiveness research (CER), biomarkers and clinical care, and health IT and personalized medicine.

More broadly, other meta-themes emerged. While advocates publicly like to frame personalized genomic medicine (PGM) in very futuristic and idealized ways—“tailored” treatment, “individualized medicines,” and “medicines that work for you”—speakers at the AAAS meeting, presented a reality of uncertainty about what personalized medicine (PM) is and the need for a lot of complex nuts-and-bolts efforts (that were often described in population rather than personalized terms).

PGM is a new term, and at this meeting it was primarily characterized as pharmacogenomics (PGx)—although some speakers, including the U.S. FDA commissioner, Margaret Hamburg, highlighted that PGM can mean different things to different people.

Speakers talked about the need to realign many of the institutions and their goals and practices to create more collaboration among agencies (the NIH and FDA in particular), to increase public-private partnerships, to create education initiatives to cross the conceptual and practice-based divides between so-called basic research and clinical research, and to make more efforts and approaches to study and include environmental exposures, not just genes, in PGM-related research.

An underlying theme of boundaries (these include professional, regulatory, disciplinary, conceptual, and scientific lab/social world boundaries) as barriers to PM/PGM was a strong one in most of these talks (although not stated in such terms), which at the end of the day were about moving PGM along. These boundaries are important to attend to. These are where concepts and practices are defined, negotiated, and contested and are also used in large part to define who can speak for and engage in PGM-related matters in the future.

So, while the term PGM is new and to some extent personalized medicine (in which today’s users of this term mean through genomics or attached to genomics in some way), stakeholders (including these speakers) redefine PGM at the same time that they redefine the institutions, practices, and/or sciences they think are at stake. In other words, they were re-presenting or describing how they want to remake themselves (their institutions) or other institutions under this rubric of PM/PGM and not start de novo.

Thus, for instance, CER was and is being re-presented to fit into a PGM scheme. These transitions are aspects that publics and public policy makers should be concerned with not the imaginary rhetoric of tailored medicine—although this rhetoric is important as social-science researchers who work on the sociology of expectations have pointed out.

While it may be enticing to use or create visions of “biomedical revolution,” or more specifically, “personalized medicine,” “tailored medicine,” or individualized medicine (these visions are of particular importance for advocates, who are attempting to create new allies for their cause), we also need more tempered discourses that are less promotional and more substantive. Underlying the AAAS talks were narratives more of continuum than of revolution, but perhaps more important, as some of the speakers hinted at (if not explicitly presented), PGM as they or others envision it may not be possible. In opening the black box of “tailored medicine,” as most of these speakers did, the enormity of PGM’s problem was revealed, as genomics was described as a newer term to characterize the study of all genes in a person/population as well as all interactions between genes and with a person/population’s environment.

Image via Genome Management Information System, Oak Ridge National Laboratory

Posted In: Policy

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